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Page 1: Preface - Microsoftnhsbtmediaservices.blob.core.windows.net/organ-donation...With the recent publication of ‘Taking Organ Transplantation to 2020 – a UK strategy’ we are entering
Page 2: Preface - Microsoftnhsbtmediaservices.blob.core.windows.net/organ-donation...With the recent publication of ‘Taking Organ Transplantation to 2020 – a UK strategy’ we are entering

Preface

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This report has been produced by Statistics and Clinical Audit, NHS Blood and Transplant. All figures quoted in this report are as reported to NHS Blood and Transplant by 20 May 2013 for the UK Transplant Registry, maintained on behalf of the transplant community and National Health Service (NHS), or for the NHS Organ Donor Register, maintained on behalf of the UK Health Departments. Former Strategic Health Authorities have been used throughout the report for convenience in comparisons with the previous year’s figures. The information provided in the tables and figures given in Chapters 2-10 does not always distinguish between adult and paediatric transplantation. For the most part, the data also do not distinguish between patients entitled to NHS treatment (Group 1 patients) and those who are not (Group 2 patients). It should also be noted that not all cornea donors or cornea grafts are necessarily reported to NHS Blood and Transplant. The UK definition of an organ donor is any donor from whom at least one organ has been retrieved with the intention to transplant. Organs retrieved solely for research purposes have not been counted in this Activity Report. Organ donation has been recorded to reflect the number of organs retrieved. For example, if both lungs were retrieved, two lungs are recorded even if they were both used in one transplant. Similarly, if one liver is donated, one liver is recorded even if it results in two or more transplants. The number of donors after brain death (DBD) and donors after circulatory death (DCD) by hospital are documented in Appendix I. Donation and transplant rates in this report are presented per million population (pmp): population figures used throughout this report are mid-2011 estimates based on ONS 2011 Census figures and are given in Appendix III. All charts presented in this report are available as an accompanying slide set available from www.organdonation.nhs.uk. Acknowledgement NHS Blood and Transplant would like to thank all those in the donation and transplantation communities responsible for providing data to the UK Transplant Registry and the Potential Donor Audit, without whom this report would not be possible. Thanks also go to NHS Blood and Transplant staff responsible for data entry and accuracy and completeness of the data.

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Foreword

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I am delighted to be writing this foreword to the Transplant Activity Report for 2012-13. A rise in organ donation for the fifth year in succession saw the NHS achieve a 50% increase in the number of deceased organ donors compared with 2007/8. This was a challenge few thought possible when the Organ Donation Taskforce set out its recommendations for increasing deceased donation five years ago and is a great achievement for everybody working in this field. Without organ donors there can be no transplantation and we’re grateful to the families of the 1,212 deceased donors and to each of the 1,101 living donors who made these precious donations possible. These donations ensured that for the eighth year in succession the number of people benefitting from an organ transplant increased. The lives of 4,212 patients were saved or improved by an organ transplant (a 6% increase on 2011-12). The sharp rise in donation after circulatory death (DCD) seen in recent years continued, with 16% growth over the last year. The number of donors after brain death (DBD) increased by 8%, an improvement on the previous year’s more modest 2% rise. Living organ donors continue to play a vital role in transplantation. Although the vast majority of living organ donors gave a kidney, 33 donated part of their liver. Of the 1,068 people receiving a living donor kidney transplant, 76 were from non-directed altruistic living donors and 55 transplants were made possible by the paired living kidney donation programme. One patient benefitted from the UK’s first non-directed living donor liver donation. The number of corneas donated in 2012-2013 was 6,390, representing an increase of 9% on last year. The increase is mainly due to the Eye Retrieval Scheme (ERS) but also due to the fact that more corneas are being donated from organ donors. With the recent publication of ‘Taking Organ Transplantation to 2020 – a UK strategy’ we are entering an important phase. Although we have seen year on year increases in activity, the UK can and must do more to save and improve lives through organ donation and transplantation. 57% of families consented or authorised deceased donation when approached in 2012-13. We need everyone to be proud to donate, when and if they can, if the NHS is to match the world leaders in the field of organ donation and transplantation and save even more lives in future years.

E. Sally Johnson Director of Organ Donation and Transplantation, NHS Blood and Transplant.

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Contents

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1 Summary of Donor and Transplant Activity .............................................................................. 1 2 Overview of Organ Donation and Transplantation ................................................................... 3

2.1 Summary of activity ............................................................................................................. 4 2.2 Transplant list ...................................................................................................................... 6 2.3 Transplants.......................................................................................................................... 7

3 Organ Donation Activity.............................................................................................................. 8

3.1 Summary of activity ............................................................................................................. 9 3.2 Organ donors .................................................................................................................... 10 3.3 Demographic characteristics ............................................................................................. 13

4 The National Organ Retrieval Service and Usage of Organs ................................................. 15

4.1 The National Organ Retrieval Service (NORS) ................................................................. 16 4.2 Retrieval and usage of organs........................................................................................... 17

5 Kidney Activity........................................................................................................................... 24

5.1 Overview ........................................................................................................................... 25 5.2 Transplant list .................................................................................................................... 27 5.3 Donor and organ supply .................................................................................................... 30 5.4 Transplants........................................................................................................................ 31 5.5 Demographic characteristics ............................................................................................. 39

6 Pancreas Activity ....................................................................................................................... 41

6.1 Overview ........................................................................................................................... 42 6.2 Transplant list .................................................................................................................... 43 6.3 Donor and organ supply .................................................................................................... 46 6.4 Transplants........................................................................................................................ 47 6.5 Demographic characteristics ............................................................................................. 49

7 Cardiothoracic Activity.............................................................................................................. 50

7.1 Overview ........................................................................................................................... 51 7.2 Transplant list .................................................................................................................... 52 7.3 Donor and organ supply .................................................................................................... 57 7.4 Transplants........................................................................................................................ 59 7.5 Demographic characteristics ............................................................................................. 61

8 Liver Activity .............................................................................................................................. 62

8.1 Overview ........................................................................................................................... 63 8.2 Transplant list .................................................................................................................... 65 8.3 Donor and organ supply .................................................................................................... 67 8.4 Transplants........................................................................................................................ 69 8.5 Demographic characteristics ............................................................................................. 71

9 Intestinal Activity ....................................................................................................................... 72

9.1 Overview ........................................................................................................................... 73 9.2 Transplant list .................................................................................................................... 73 9.3 Transplants........................................................................................................................ 74

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10 Cornea Activity........................................................................................................................... 75

10.1 Overview ........................................................................................................................... 76 10.2 Donor and tissue supply.................................................................................................... 78 10.3 CTS Eye Bank activity....................................................................................................... 80 10.4 Transplants........................................................................................................................ 81 10.5 Demographic characteristics ............................................................................................. 83

11 Survival Rates Following Transplantation............................................................................... 84

11.1 Kidney graft and patient survival ................................................................................... 86 11.1.1 Adult kidney recipients - donor after brain death (DBD)........................................ 86 11.1.2 Adult kidney recipients - donor after circulatory death (DCD) ............................... 87 11.1.3 Adult kidney recipients - living donor .................................................................... 88 11.1.4 Paediatric kidney recipients - donor after brain death (DBD) ................................ 89 11.1.5 Paediatric kidney recipients - living donor............................................................. 90

11.2 Pancreas graft and patient survival ............................................................................... 91 11.2.1 Simultaneous kidney/pancreas transplants - donor after brain death (DBD) ........ 91 11.2.2 Simultaneous kidney/pancreas transplants - donor after circulatory death (DCD) 92 11.2.3 Pancreas only transplants - donor after brain death (DBD) .................................. 93 11.2.4 Pancreas only transplants - donor after circulatory death (DCD).......................... 94

11.3 Cardiothoracic patient survival...................................................................................... 95 11.3.1 Adult heart recipients ............................................................................................ 95 11.3.2 Adult heart/lung block recipients ........................................................................... 96 11.3.3 Adult lung recipients – donors after brain death (DBD)......................................... 97 11.3.4 Adult lung recipients – donors after circulatory death (DCD) ................................ 98 11.3.5 Paediatric heart recipients .................................................................................... 99

11.4 Liver patient survival .................................................................................................... 100 11.4.1 Adult recipients - donor after brain death (DBD) ................................................... 100 11.4.2 Adult recipients - donor after circulatory death (DCD) .......................................... 101 11.4.3 Paediatric recipients - donor after brain death (DBD) ........................................... 102

11.5 Intestinal patient survival ............................................................................................. 103 11.6 Cornea graft survival .................................................................................................... 104

12 NHS Organ Donor Register..................................................................................................... 105 13 National Potential Donor Audit ............................................................................................... 111

13.1 Introduction ..................................................................................................................... 112 13.2 Definitions ....................................................................................................................... 112 13.3 Breakdown of audited deaths in ICUs and emergency departments .............................. 112 13.4 Eligible donors ................................................................................................................ 115 13.5 Consent/ authorisation rates ........................................................................................... 121 13.6 Specialist Nurse - Organ Donation (SN-OD) involvement............................................... 123 13.7 Comparison with previous years ..................................................................................... 126

Appendices..................................................................................................................................... 127

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1 Summary of Donor and Transplant Activity

Summary of Donor and Transplant Activity

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In the financial year to 31 March 2013, compared with the previous year

• there was an 11% increase in the number of deceased donors to 1,212, the highest number ever in the UK.

• the number of donors after brain death increased by 8% to 705, while the number of donors

after circulatory death increased by 16% to 507

• the number of living donors increased by 4% to 1,101; living donors account for half of the total number of organ donors

• the number of patients whose lives were saved or improved by an organ transplant increased

by 6% to 4,212

• 3,697 patients had their sight restored through a cornea transplant, representing an increase of 2%

The total number of patients registered for a transplant has fallen slightly, so that:

• there were 7,332 patients waiting for a transplant at the end of March 2013, with a further 3,030 temporarily suspended from transplant lists

• 466 patients died while on the active waiting list for their transplant and a further 766 were

removed from the transplant list. The removals were mostly as a result of deteriorating health and ineligibility for transplant and many of these patients would have died shortly afterwards.

Some of the other key messages from this report are that, compared with last year, there has been:

• a decrease of 3% in the number of pancreas transplants

• an increase of 4% in the total number of liver transplants

• an increase of 5% in the total number of cardiothoracic organ transplants

• an increase of 7% in the total number of kidney transplants

• an increase of 5% in the number of eligible organ donors identified to 4,302 in 2012-2013

• an increase in all key metrics of the organ donation pathway, resulting in nearly 200 additional families consenting to/ authorising donation (from 1,488 to 1,675)

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2 Overview of Organ Donation and Transplantation

Overview of Organ Donationand Transplantation

A summary of the main features of organ donation and transplantation activity in the UK during the financial year from 1 April 2012 to 31 March 2013

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2.1 Summary of activity As the total number of deceased donors and transplants continued to increase this year, the number of patients on the active transplant list at 31 March 2013 is 304 less than on the same date last year. This drop reflects an increasing number of transplants performed and a reasonably steady number of patients joining the transplant list each year. The increase in donor and transplant numbers (1 April 2003 to 31 March 2013) and the number of patients registered on the transplant lists at 31 March each year are shown in Figure 2.1. There were 206 more deceased donor transplants in 2012-2013 than in the previous year, representing a 7% increase. The corresponding increase in the number of deceased donors was 11%.

770 751 764 793 809 899 959 1010 1088 1212

23962241 2196

2385 23812552 2644 2695

29053111

5673

6142

6698

7219

76557877 7997

78007636

7332

0

1000

2000

3000

4000

5000

6000

7000

8000

9000

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

Year

Num

ber

DonorsTransplantsTransplant list

Number of deceased donors and transplants in the UK, 1 April 2003 - 31 March 2013, and patients on the active transplant lists at 31 March

Figure 2.1

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Figure 2.2 shows the number of deceased and living donors for 2003-2013. The number of deceased organ donors in the UK fell over a number of years but following the implementation of the Organ Donation Taskforce recommendations, the numbers rose and are continuing to increase. The number of donors after brain death (DBD) has increased by 16% over the last six years, reversing the trend which had seen a 13% decrease between 2003-2004 and 2007-2008. The number of donors after circulatory death (DCD) has been increasing year-on-year in an effort to bridge the gap between the number of donors and the number of patients waiting for a transplant. In particular the number of these donors has increased by 154% since 2007-2008. Living donors remained relatively stable, with 1,101 this year representing a 4% increase on last year.

697664

637 634609 611 624 637 652

705

73 87127

159200

288335

373

436

507472 485

599

702

858

961

1062 1046 10551101

0

200

400

600

800

1000

1200

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013Year

Num

ber

DBD donorsDCD donorsLiving donors

Number of deceased and living donors in the UK, 1 April 2003 - 31 March 2013Figure 2.2

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2.2 Transplant list At 31 March 2013, 7,332 patients were registered for an organ transplant in the UK on the active transplant list. A further 3,030 patients were temporarily suspended from the active national transplant list because they were unfit or otherwise unavailable for transplant. Details of numbers of patients on each of the organ transplant lists are given in Table 2.1 for 31 March 2012 and 2013. The total number fell by 304 patients (4%) due to falls in the number of patients on the kidney and liver transplant lists.

Table 2.1 Active transplant lists in the UK at 31 March 2012 and 2013

2012 2013 % Change

Kidney & pancreas patients 6669 6387 -4 Kidney 6417 6115 -5 Kidney & pancreas 193 208 +8 Pancreas 35 37 +6 Pancreas islets 24 27 +13

Cardiothoracic patients 399 439 +10 Heart 167 197 +18 Heart/lung 16 16 0 Lung(s) 216 226 +5

Liver patients 534 472 -12

Intestinal patients1,2 13 9 -

Other multi-organ patients3 21 25 +19

ALL PATIENTS 7636 7332 -4 Percentages not reported when fewer than 10 in either year 1 Excludes bowel only patients see Table 9.1 in Chapter 9 2 Three including kidney in 2012, 3 including kidney in 2013 3 Includes patients waiting for kidney and liver transplants (18 in 2012, 18 in 2013), kidney and heart transplants (2 in 2012, 3 in 2013), liver and pancreas transplants (1 in 2012, 3 in 2013), kidney, liver and pancreas (1 in 2013)

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2.3 Transplants There was a 6% increase in the total number of organ transplants (from deceased and living donors) last year: 4,212 transplants were performed in 2012-2013 compared with 3,960 in 2011-2012 (Table 2.2). All multi-organ transplants are identified separately as are transplants from living donors. The total number of kidney transplants increased by 7% in 2012-2013; kidney only transplants from donors after circulatory death increased by 12%, and the number of living donor kidney transplants increased by 6%. The total number of cardiothoracic organ transplants rose by 5%, the number of liver transplants rose by 4% and the number of pancreas transplants (including pancreas only, kidney/pancreas and pancreas islets) decreased by 3%.

Table 2.2 Transplants performed in the UK, 1 April 2011 - 31 March 2013 Transplant 2011-2012 2012-2013 % Change

DBD kidney 960 1034 +8 DCD kidney 639 716 +12 Living donor kidney 1009 1068 +6

DBD Kidney & pancreas 138 133 -4 DCD Kidney & pancreas 35 33 -6 DBD Pancreas1 24 33 +38 DCD Pancreas 13 5 - Pancreas islets 30 30 0

Deceased heart 138 142 +3 Domino heart 3 0 - Heart/lung 5 3 - DBD Single lung 27 19 -30 DCD Single lung 4 9 - DBD Double lung 127 134 +6 DCD Double lung 17 25 +47 Partial lung 0 1 -

DBD liver 480 520 +8 DCD liver 130 135 +4 Domino liver 5 2 - DBD liver lobe 109 117 +7 DCD liver lobe 2 1 - Living donor liver lobe 38 31 -18

Kidney & heart 0 3 - Kidney & liver 18 11 -39 Liver & pancreas 7 7 - Liver, kidney & pancreas 2 0 -

TOTAL ORGAN TRANSPLANTS 3960 4212 +6

Total kidney transplants1 2801 2998 +7 Total pancreas transplants1 249 241 -3 Total cardiothoracic transplants 321 336 +5 Total liver transplants1 791 824 +4 Percentage not reported when fewer than 10 in either year 1 Includes intestinal transplants, 10 in 2011-2012 (9 including liver (2 including kidney)) and 8 in 2012-2013 (7 including liver), excludes bowel only transplants, see Table 9.3 in Chapter 9

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3 Organ Donation Activity

Organ DonationActivity

Key messages

• There has been an 11% increase in deceased donors (to 1,212) and a 4% increase in living organ donors (to 1,101) compared with last year

• Compared with 809 deceased donors in 2007-2008, there has been an increase of

50% to 1,212 in 2012-2013, meeting the target increase identified by the Organ Donation Taskforce

• The number of donors after brain death increased by 8% to 705 and there was a

16% increase in donors after circulatory death to 507 • Donors after circulatory death provide, on average, one less organ for

transplantation than donors after brain death • Donor characteristics are continuing to change: donors are older, more obese,

and less likely to have suffered a trauma-related death, all of which have adverse effects on transplant outcomes

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3.1 Summary of activity There was an 11% increase in the number of deceased organ donors in 2012-2013. This was a result of 8% more donors after brain death (DBD) and 16% more donors after circulatory death (DCD). The 1,212 donors represented a 50% increase over the number of organ donors in 2007-2008 (809), meeting the target increase identified by the Organ Donation Taskforce (Organs for Transplants: a report from the Organ Donation Taskforce). The 1,212 deceased organ donors gave 4,096 organs compared with 1,088 donors and 3,726 organs in 2011-2012. This represents a 10% increase in organs donated. This is lower than the rate of increase in the number of donors because fewer organs can be used from donors after circulatory death, which is where the greatest increase was seen. In particular DCD donors do not provide hearts for transplant. Table 3.1 shows deceased organ donors according to the organs they donated. Nearly all deceased donors (95%) gave a kidney and of these the majority (72%) also donated at least one other organ. Only 12% of donors after brain death were single organ donors, the majority of which were kidney only donors. By contrast, 58% of donors after circulatory death were single organ donors, the majority (96%) of these donating just their kidneys. Although the vast majority of living organ donors donated a kidney, 33 donated part of their liver. All living donations are approved by the Human Tissue Authority.

Table 3.1 Organ donors in the UK, 1 April 2012 - 31 March 2013, by organ types donated

DBD DCD Living donor TOTAL

Kidney only 43 280 1068 1391 Kidney & thoracic 7 11 - 18 Kidney & liver 203 107 - 310 Kidney & pancreas 6 24 - 30 Kidney, thoracic & liver 50 6 - 56 Kidney, thoracic & pancreas 5 2 - 7 Kidney, liver & pancreas 152 50 - 202 Kidney, thoracic, liver & pancreas 187 15 - 202 Thoracic only 2 4 - 6 Thoracic & liver 2 - - 2 Thoracic & pancreas 1 - - 1 Thoracic, liver & pancreas 2 - - 2 Liver only 39 7 33 79 Liver & pancreas 5 - - 5 Pancreas only 1 1 - 2

TOTAL 705 507 1101 2313

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3.2 Organ donors Organ donor rates per million population (pmp) for 2012-2013 are given by country and former Strategic Health Authority according to where the donor lived in Table 3.2 while the number of deceased donors are shown based on location of the hospital in which they died in Table 3.3. Table 3.4 shows the number of deceased donors by Organ Donation Services Team. Appendix 1 shows a more detailed breakdown of the number of donors from the donating hospitals. Number and rates of utilised donors are given in Chapter 4.

Table 3.2 Organ donation rates per million population (pmp), in the UK, 1 April 2012 - 31 March 2013, by country/Strategic Health Authority of donor residence1 Country of donation/ DBD DCD TOTAL Living Strategic Health Authority N (pmp) N (pmp) N (pmp) N (pmp)

North East 45 (17.3) 32 (12.3) 77 (29.6) 49 (18.8) North West 67 (9.5) 47 (6.7) 114 (16.1) 131 (18.6) Yorkshire and The Humber 53 (10.0) 34 (6.4) 87 (16.4) 82 (15.5) North of England 165 (11.0) 113 (7.6) 278 (18.6) 262 (17.5)

East Midlands 32 (7.0) 36 (7.9) 68 (15.0) 56 (12.3) West Midlands 68 (12.1) 43 (7.7) 111 (19.8) 92 (16.4) East of England 72 (12.3) 79 (13.5) 151 (25.8) 95 (16.2) Midlands and East 172 (10.7) 158 (9.9) 330 (20.6) 243 (15.2)

London 77 (9.4) 49 (6.0) 126 (15.4) 177 (21.6)

South East Coast 54 (12.1) 31 (6.9) 85 (19.0) 74 (16.5) South Central 60 (14.4) 25 (6.0) 85 (20.3) 87 (20.8) South West 52 (9.8) 64 (12.1) 116 (21.9) 76 (14.3) South of England 166 (11.9) 120 (8.6) 286 (20.5) 237 (17.0)

England 580 (10.9) 440 (8.3) 1020 (19.2) 919 (17.3) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) 1 (12.5) Channel Islands 3 (18.8) 0 (0.0) 3 (18.8) 5 (31.3)

Wales 38 (12.4) 18 (5.9) 56 (18.3) 47 (15.4)

Scotland 55 (10.5) 38 (7.2) 93 (17.7) 74 (14.1)

Northern Ireland 29 (16.0) 11 (6.1) 40 (22.1) 55 (30.4)

TOTAL 705 (11.1) 507 (8.0) 1212 (19.1) 1101 (17.3) 1 Includes 94 donors (13 Deceased, 81 living) where the hospital postcode was used in place of an unknown donor postcode

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Table 3.2 shows variation in the number of DBD and DCD donors pmp across the UK. There were 11.1 DBD donors pmp for the UK as a whole, but across the former English Strategic Health Authorities (SHA) this ranged between 7.0 and 17.3 pmp. However, the number of eligible donors pmp also varies and further information can be seen in Chapter 13. It should be noted that these figures are not directly comparable, however, because certain categories of patients are excluded from the Potential Donor Audit. For DCD donors the UK rate is 8.0 pmp, ranging from 5.9 to 8.3 pmp across countries of the UK and from 6.0 to 13.5 pmp in the former English SHAs. No adjustment has been made for any differences in demographics of the populations across centres or SHAs.

Table 3.3 Deceased organ donors in the UK, 1 April 2012 - 31 March 2013, by country/Strategic Health Authority of hospital of donor death Country of donation/ DBD DCD TOTAL Strategic Health Authority N N N

North East 54 37 91 North West 66 45 111 Yorkshire and The Humber 50 36 86 North of England 170 118 288

East Midlands 25 24 49 West Midlands 71 49 120 East of England 67 79 146 Midlands and East 163 152 315

London 120 67 187

South East Coast 32 22 54 South Central 48 26 74 South West 50 56 106 South of England 130 104 234

England 583 441 1024 Isle of Man 0 0 0 Channel Islands 2 0 2

Wales 35 17 52

Scotland 56 38 94

Northern Ireland 29 11 40

TOTAL 705 507 1212

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Table 3.4 Deceased organ donors in the UK, 1 April 2012 - 31 March 2013, by Organ Donation Services Team Team DBD DCD TOTAL

N N N

Eastern 74 80 154 London 93 59 152 Midlands 85 65 150 North West 74 45 119 Northern 54 41 95 Northern Ireland 29 11 40 Scotland 56 38 94 South Central 62 39 101 South East 61 30 91 South Wales 29 16 45 South West 36 45 81 Yorkshire 52 38 90

TOTAL 705 507 1212

The mean number of organs retrieved per donor in 2012-2013 is given by country in Table 3.5. Overall for adult donors, an average of 3.9 organs were donated per DBD donor and 2.6 per DCD donor. For adult DBD donors, the rate ranged from 3.7 organs per donor in Wales to 3.9 in England and Scotland.

Table 3.5 Organs retrieved per donor, in the UK, 1 April 2012 - 31 March 2013, by country of donor residence Country Adult Paediatric DBD DCD TOTAL DBD DCD TOTAL

England 3.9 2.6 3.3 4.5 3.3 4.0 Wales 3.7 2.9 3.4 4.7 - 4.7 Scotland 3.9 2.5 3.3 7.0 - 7.0 Northern Ireland 3.8 2.4 3.4 7.0 4.0 5.5

TOTAL 3.9 2.6 3.3 4.8 3.3 4.2

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3.3 Demographic characteristics While the number of donors overall is increasing, it is important to be aware that there have been changes over time with regard to donor characteristics (Table 3.6). In 2012-2013, 34% of deceased donors were aged 60 years or more compared with 16% in 2003-2004 (Figure 3.1). In particular the proportion of these donors aged at least 70 years has increased from 2% to 12% over the same time period. The trend is similar for both DBD and DCD. The proportion of clinically obese donors (Body Mass Index (BMI) of 30 or higher) has increased from 16% to 26% in deceased donors in the last 10 years (Figure 3.2) and the trend was similar for both DBD and DCD donors. In addition, the proportion of all deceased donors after a trauma death has decreased from 16% to 6% over the same time period. All of these changes may have an adverse impact on the quality of the organs and the subsequent transplant outcome for the recipient. Table 3.6 also indicates the ethnicity of deceased organ donors, highlighting that 5% of donors are from ethnic minority groups. By contrast, ethnic minority groups represent 8% of the UK population.

Table 3.6 Demographic characteristics of organ donors in the UK 1 April 2012 - 31 March 2013 DBD DCD TOTAL

N % N % N %

Age 0-17 24 3 13 3 37 3 18-49 296 42 156 31 452 37 50-59 187 27 125 25 312 26 60-69 135 19 133 26 268 22 70+ 63 9 80 16 143 12 Mean (SD) 50 (16) 54 (16) 51 (16)

BMI 0-19 38 5 34 7 72 6

20-29 500 71 325 64 825 68 30+ 166 24 144 28 310 26 Unknown 1 0 4 1 5 0 Mean (SD) 27 (6) 27 (6) 27 (6)

Intracranial 614 87 395 78 1009 83 Cause of

death Trauma 47 7 27 5 74 6 Other 44 6 85 17 129 11

Ethnicity White 665 94 490 97 1155 95

Asian 13 2 8 2 21 2 Black 17 2 3 1 20 2 Other 9 1 6 1 15 1 Unknown 1 0 0 0 1 0

O 317 45 228 45 545 45 Blood

group A 284 40 200 39 484 40 B 71 10 64 13 135 11 AB 33 5 15 3 48 4

Male 341 48 307 61 648 53 Donor

gender Female 364 52 200 39 564 47

TOTAL 705 100 507 100 1212 100

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7 8 7 8 5 7 4 4 4 3

52 49 5053

4850

46 4238 37

25 25 2622

26 24

2423

25 26

14 15 14 13 17 1518

2023 22

2 3 3 3 3 5118 10 12

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013Year

Per

cent

age

70+60-6950-5918-490-17

Age of deceased donors in the UK, 1 April 2003 - 31 March 2013Figure 3.1

770 751 764 793 809 899 959 1010 1088 1212N=

8 8 6 7 6 7 5 7 6 6

76 76 78 74 75 7271

73 71 68

16 16 16 18 19 20 24 20 23 26

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013Year

Per

cent

age 30+

20-290-19

BMI of deceased donors in the UK, 1 April 2003 - 31 March 2013Figure 3.2

726 707 724 750 771 886 931 995 1082 1208N=

Note that BMI cannot be determined for all deceased donors thus numbers indicated in Figure 3.2 are the numbers of donors for which BMI was available, not total number of donors.

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4 The National Organ Retrieval Service and Usage of Organs

The National Organ Retrieval Serviceand Usage of Organs

Key messages

• National Organ Retrieval Service teams attended 726 DBD donors and 857 DCD donors; 3% of DBD donors and 41% of DCD donors attended did not proceed to donation

• 83% of deceased donor kidneys offered to transplant centres are subsequently

transplanted, compared with 61% of livers, 33% of pancreases, 28% of hearts and 22% of lungs; the remaining organs are not transplanted due to lack of suitability of the donor or organ for any patient on the transplant list

• The UK actual donor rate is 19.1 pmp, while the utilised donor rate is 17.7 pmp,

reflecting that 8% of organ donors result in no organs being transplanted

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4.1 The National Organ Retrieval Service (NORS) A National Organ Retrieval Service (NORS) was introduced in the UK on 1 April 2010. The service comprises nine abdominal organ retrieval teams and six cardiothoracic organ retrieval teams. These teams are based in liver and cardiothoracic transplant centres, respectively.

At any one time, 7 abdominal teams and all 6 cardiothoracic teams are on call - 24 hours per day, seven days per week. In two areas of the country, two abdominal retrieval teams share the on call responsibilities, each being on call on alternative weeks. If a team is the first on-call for a particular donor hospital, they are required to attend within an agreed timescale if at least one organ has been accepted for transplant when offered to the transplant centres in the UK. Each team has a designated area for which they are first on-call, based on the premise that the travel time to any hospital in their area should be less than three hours. There are some exceptions to this principle for remote hospitals. If a team is already retrieving when they are called to attend a donor, then a second team will be called in to retrieve, and so on.

The number of donors after brain death and donors after circulatory death that were attended by each of the teams is shown in Table 4.1. The table also shows the number of proceeding (actual) organ donors and the number that did not proceed to donation. Many of the potential donors after circulatory death prove unsuitable for organ donation due to a prolonged time to death in which time the organs deteriorate. The number of donors attended per team varies according to the number of potential donors identified in each of the areas, as the areas are not of equal size.

A small number of donors are attended by local kidney transplant teams. This is typically for donors after circulatory death when only the donor's kidneys have been accepted for transplant. There is no expectation that local kidney teams retrieve organs, but they are appropriately reimbursed if they are willing and able to do so.

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Table 4.1 Number of actual and non-proceeding donors per retrieval team

Donors after brain death Donors after circulatory death

Retrieval team Actual Non-

proceeding% non-

proc No.

attended ActualNon-

proceeding % non-

proc No.

attended Abdominal Birmingham 94 1 1 95 69 51 43 120 Cambridge 94 5 5 99 101 45 31 146 Cardiff 36 2 5 38 17 17 50 34 King's 123 3 2 126 74 46 38 120 Leeds / Manchester 103 3 3 106 65 80 55 145 Newcastle 83 3 3 86 52 41 44 93 Oxford 57 - - - 44 25 36 69 Royal Free 52 2 4 54 40 28 41 68 Scotland 61 - - - 40 16 29 56 Abdominal total 703 19 3 722 502 349 41 851 Cardiothoracic Birmingham 40 21 34 61 8 11 58 19 Harefield 44 25 36 69 8 12 60 20 Manchester 44 17 28 61 3 15 83 18 Newcastle 51 11 18 62 12 14 54 26 Papworth 57 20 26 77 7 8 53 15 Scotland 19 24 56 43 - - - - Cardiothoracic total 255 118 32 373 38 60 61 98 Total donors (abdominal and/or cardiothoracic)

705 21 3 726 507 350 41 857

Note: there were 10 donors attended by a local team. St George’s attended three of the local abdominal donors and Great Ormond street attended two of the local cardiothoracic donors. Five donors were attended by an overseas team.

4.2 Retrieval and usage of organs There were 1,212 actual deceased organ donors last year, but not all organs from these donors were offered for transplantation. Table 4.2 shows the number of organs offered, retrieved and transplanted from the 705 DBD and 507 DCD donors. The number of organs from these donors that were subsequently used for research purposes is also shown. The number of organs offered for transplant excludes those where the donor did not meet the nationally agreed age criteria for suitability for donation of that specific organ. There are no age cut-offs agreed for kidney and liver donation. Each year, a number of actual organ donors result in no transplants. Donors resulting in at least one transplant are termed ‘utilised’ donors and the number of actual and utilised donors for the UK as a whole is shown in Table 4.3. The number of donors per million of population is also shown. Last year 8% of actual donors resulted in no organ transplants. This compares with 6% in 2011-2012.

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Figures 4.1 and 4.2 show offering, retrieval and transplantation of organs, in terms of percentages. Charts start at 100% for each organ, representing all organs from the 705 DBD and 507 DCD donors. The charts indicate the proportion of those organs following the pathway through each step to transplantation e.g. meeting national donor age criteria, having consent (authorisation in Scotland), being offered out to transplant centres, being retrieved for transplant and resulting in transplantation. For example, Figure 4.1 shows that 28% of the pancreases from the 705 DBD donors were transplanted, but that 37% of pancreases from donors within the nationally agreed age limit of 60 years were transplanted. Transplant rates of kidneys and livers are generally high, while other organs, even allowing for the agreed age limits, are less often transplanted. Reasons for organs not being offered for transplant, being offered but not accepted and retrieved and for being retrieved but not subsequently transplanted are shown in Table 4.4 for abdominal organs from DBD donors, Table 4.5 for abdominal organs from DCD donors and in Table 4.6 for cardiothoracic organs. Reasons for the medical unsuitability of a donor include infections, tumours, anatomy and disease. Non-medical reasons include donor size. Clinical unsuitability of an organ encompasses poor perfusion, prolonged ischaemia time, past history of donor and, in the case of pancreases for islets, insufficiency of viable islet yield. Reasons reported under ‘other’ include logistical and recipient related issues in addition to un-coded reasons reported of a miscellaneous nature. These tables also indicate the number of organs from UK donors that were transplanted overseas. These organs were not accepted for transplant by any UK transplant centre, but were accepted for suitable recipients identified elsewhere, usually in Europe. Other than livers fulfilling an arrangement for the transplantation of super-urgent patients in the Republic of Ireland, only hearts and lungs were exported for transplant outside the UK. Organs from outside the UK are occasionally imported for transplant. In 2012/13 these were 7 hearts (including 2 from ROI) and 24 livers (including 21 from ROI).

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Table 4.2 Donation and transplantation of organs from 1212 deceased donors in the UK, 1 April 2012 – 31 March 2013

Organ

Organs meeting initial suitability

criteria and offered for transplant

Organs retrieved for transplant Organs transplanted

Organs used for research (from actual

organ donors)

N % of

offered N % of

retrieved % of

offered DBD organ donors Kidney 1403 1291 92 1196 93 85 38 Liver 693 640 92 582 91 84 42 Pancreas1 475 347 73 195 56 41 65 Heart2 502 144 29 144 100 29 0 Lung3 1054 334 32 309 93 29 2 DCD organ donors Kidney 1012 974 96 797 82 79 96 Liver 480 185 39 136 74 28 38 Pancreas1 240 92 38 41 45 17 27 Lung3 592 75 13 59 79 10 0 Deceased organ donors Kidney 2415 2265 94 1993 88 83 134 Liver 1173 825 70 718 87 61 80 Pancreas1 715 439 61 236 54 33 92 Heart2 502 142 28 142 100 28 0 Lung3 1646 407 25 366 90 22 2 1 Excludes donors aged > 60 years 2 Excludes donors aged > 65 years or died due to myocardial infarction 3 Excludes donors aged > 65 years

Table 4.3 Actual and utilised deceased donors in the UK, 1 April 2012 – 31 March 2013

DBD (pmp) DCD (pmp) Total (pmp)

Actual donors 705 (11.1) 507 (8.0) 1212 (19.1) Utilised donors1 685 (10.8) 436 (6.9) 1121 (17.7)

1 Utilised donors defined as donors where one or more organs were retrieved and transplanted

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Donation and transplantation rates of organs from DBD organ donors in the UK, 1 April 2012 – 31 March 2013

1 Hearts – in addition to age criteria, donors who died due to myocardial infarction are excluded

0

10

20

30

40

50

60

70

80

90

100

Organs fromactual DBD

donors

Donor agecriteria met

Consent fororgan donation

Organs offeredfor donation

Organs retrievedfor transplant

Organstransplanted

Per

cent

age

Kidney Liver Pancreas Heart Lungs

Figure 4.1

% of all organs

% of all organsmeeting age

criteria1

85%83%

28%22%20%

85%83%

37%26%25%

1

Transplanted:

0

10

20

30

40

50

60

70

80

90

100

Organs fromactual DCD

donors

Donor agecriteria met

Consent fororgan donation

Organs offeredfor donation

Organs retrievedfor transplant

Organstransplanted

Per

cent

age

Kidney Liver Pancreas Lungs

Donation and transplantation rates of organs from DCD organ donors in the UK, 1 April 2012 – 31 March 2013

Figure 4.2

% of all organs

% of all organsmeeting age

criteria

79%

27%

8%6%

79%

27%

14%8%

Transplanted:

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Table 4.4 Reasons for non-retrieval and non-use of abdominal organs from organ donors after brain death (DBD) in the UK, 1 April 2012 – 31 March 2013

Kidney Liver Pancreas All DBD organ donors 705 705 705 Donors from whom organs not offered for donation 4 12 230 Reasons for organs not being offered Family permission refused 3 11 19 Permission refused by coroner 11 1 2 Donor unsuitable – age 0 0 183 Donor unsuitable – past history 0 0 22 Other 0 0 4 TOTAL DONORS WITH ORGANS NOT OFFERED 4 12 230 Organs offered for donation 1403 693 475

Organs not retrieved (% of organs offered for donation) 112 (8) 53 (8) 128 (27) Reasons for non-retrieval Donor Donor unsuitable – medical 19 5 10 Donor unsuitable – non-medical 5 0 20 Donor age 4 0 11 Organ Organ unsuitable – clinical 37 33 50 Poor function 21 7 19 Other Other 26 8 18 TOTAL ORGANS NOT RETRIEVED 112 53 128

Organs retrieved (% of organs offered for donation) 1291 (92) 640 (92) 347 (73) Organs transplanted in the UK 1196 575 195 Organs transplanted overseas 0 72 0 Organs not transplanted 95 58 152 Reasons for organ not being transplanted Donor Donor unsuitable – medical 36 8 18 Donor unsuitable – non-medical 0 0 0 Donor age 0 0 0 Organ Organ unsuitable – clinical 20 36 108 Poor function 2 0 0 Other Other 37 14 26 TOTAL ORGANS NOT TRANSPLANTED (Number used for research)

95 (38) 58 (42) 152 (65)

1 One kidney not offered for donation due to permission refused by coroner 2 Transplanted into super-urgent patients in the Republic of Ireland

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Table 4.5 Reasons for non-retrieval and non-use of abdominal organs from organ donors after circulatory death (DCD) in the UK, 1 April 2012 – 31 March 2013

Kidney Liver Pancreas All DCD organ donors 507 507 507 Donors from whom organs not offered for donation 1 27 267 Reasons for organs not being offered Family permission refused 1 17 22 Permission refused by coroner 0 10 5 Donor unsuitable – age 0 0 206 Donor unsuitable – past history 0 0 17 Other 0 0 17 TOTAL DONORS WITH ORGANS NOT OFFERED 1 27 267 Organs offered for donation 1012 480 240

Organs not retrieved (% of organs offered for donation) 38 (4) 295 (61) 148 (62) Reasons for non-retrieval Donor Donor unsuitable – medical 1 8 7 Donor unsuitable – non-medical 4 14 17 Donor age 0 72 22 Organ Organ unsuitable – clinical 13 97 56 Poor function 4 23 8 Other Other 16 81 38 TOTAL ORGANS NOT RETRIEVED 38 295 148

Organs retrieved (% of organs offered for donation) 974 (96) 185 (39) 92 (38) Organs transplanted in the UK 797 136 41 Organs transplanted overseas 0 0 0 Organs not transplanted 177 49 51 Reasons for organ not being transplanted Donor Donor unsuitable – medical 63 7 6 Donor unsuitable – non-medical 0 1 0 Donor age 1 1 0 Organ Organ unsuitable – clinical 56 27 33 Poor function 4 0 0 Other Other 53 13 12 TOTAL ORGANS NOT TRANSPLANTED (Number used for research)

177 (96) 49 (38) 51 (27)

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Table 4.6 Reasons for non-retrieval and non-use of cardiothoracic organs from organ donors in the UK, 1 April 2012 – 31 March 2013

Heart (DBD) Lung (DBD) Lung (DCD) All organ donors 705 705 507 Donors from whom organs not offered for donation 203 178 211 Reasons for organs not being offered Family permission refused 56 45 62 Permission refused by coroner 28 20 15 Donor age >65 years 113 113 134 Donor COD of cardiac arrest or MI 6 0 0 TOTAL DONORS WITH ORGANS NOT OFFERED 203 178 211 Organs offered for donation 502 1054 592

Organs not retrieved (% of organs offered for donation) 358 (71) 720 (68) 517 (87) Reasons for non-retrieval Donor Donor unsuitable – medical 19 43 38 Donor unsuitable – non-medical 47 45 70 Donor age 23 26 56 Organ Organ unsuitable – clinical 104 195 134 Poor function 116 292 136 Other Other 49 119 83 TOTAL ORGANS NOT RETRIEVED 358 720 517

Organs retrieved (% of organs offered for donation) 144 (29) 334 (32) 75 (13) Organs transplanted in the UK 141 291 59 Organs transplanted overseas 3 18 0 Organs not transplanted 0 25 16 Reasons for organ not being transplanted Donor Donor unsuitable – medical 0 0 3 Donor unsuitable – non-medical 0 0 0 Organ Organ unsuitable – clinical 0 2 0 Poor function 0 4 4 Other Other 0 19 9 TOTAL ORGANS NOT TRANSPLANTED (Number used for research)

0 (0) 25 (2) 16 (0)

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5 Kidney Activity

Kidney Activity Key messages

• The number of deceased kidney donors increased by 11% to 1,148 • Kidney transplants from living donors increased by 6% to 1,068, and transplants

from deceased donors increased by 8% to 1,930

• 55 kidney transplants were made possible by the paired living kidney donation programme

• Non-directed, altruistic living kidney donation resulted in 76 living donor kidney

transplants

• The number of patients registered for a kidney this year fell by 4% from 6,633 to 6,348

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5.1 Overview The number of deceased kidney donors increased by 11% in 2012-2013 compared to 2011-2012 and the number of deceased donor kidney transplants increased by 8%. These increases are very welcome for the 6,348 patients waiting for a kidney transplant and for the fourth year running the number of patients on the national list for a kidney transplant has declined, as a consequence of increased transplantation and broadly static listing rates. A summary of activity for deceased donor kidney transplants and the transplant list at year end for the last ten years is shown in Figure 5.1. Despite the drop in the last four years, the number of patients registered on the active transplant list at 31 March 2013 for a kidney or kidney and pancreas transplant is 25% higher than the numbers on the list in 2004.

734 712 722 765 789 859 931 957 1031 11481388 1308 1326 1440 1453 1570 1657 1667 1792 1930

50745425

5863

6481

69807190 7183

68716633

6348

0

1000

2000

3000

4000

5000

6000

7000

8000

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

Year

Num

ber

DonorsTransplantsTransplant list

Deceased donor kidney programme in the UK, 1 April 2003 - 31 March 2013 Number of donors, transplants and patients on the active transplant list at 31 March

Figure 5.1

Table 5.1 shows the number of deceased and living donor kidney transplants carried out in 2012-2013 at each centre. Kidney transplants from donors after circulatory death are increasingly common and in this financial year only one adult kidney transplant centre did not perform any such transplants. As yet, very few kidneys from donors after circulatory death are transplanted in paediatric patients (<18 years). Donation figures for centres in North and South Thames are not reported individually as they have shared designated areas and donor populations. Multi-organ transplants including a kidney are included in the table. The total number of deceased kidney donors rose to 1,148 in 2012-2013 from 1,031 in 2011-2012 and the number of transplants increased from 1,792 to 1,930. The number of kidney donors after circulatory death increased to 495 from 419 in 2011-2012 and the number of transplants from such donors increased by 11% to 749.

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Table 5.1 Kidney donors and transplants, 1 April 2012 - 31 March 2013 (2011-2012) and transplant list at 31 March 2013 (2012) in the UK, by centre/alliance Centre/alliance Deceased kidney donors Deceased donor transplants Living donor

transplants Active transplant list

DBD DCD DBD DCD

Belfast 27 (35) 10 (3) 26 (27) 0 (0) 50 (52) 155 (179) Birmingham 62 (40) 35 (32) 73 (69) 19 (16) 73 (57) 589 (622) Bristol 23 (19) 31 (29) 56 (27) 26 (32) 36 (42) 348 (367) Cambridge 41 (40) 61 (40) 40 (47) 99 (76) 45 (47) 218 (223) Cardiff 23 (25) 13 (27) 43 (41) 51 (67) 43 (39) 143 (184) Coventry 5 (9) 13 (6) 15 (22) 8 (6) 22 (35) 108 (119) Edinburgh 26 (37) 17 (16) 41 (59) 24 (21) 29 (24) 221 (188) Glasgow 25 (13) 19 (12) 67 (59) 29 (24) 42 (31) 321 (314) Great Ormond Street 0 (0) 0 (0) 10 (8) 0 (1) 13 (21) 16 (15) Leeds 38 (33) 24 (21) 78 (75) 61 (53) 50 (46) 287 (317) Leicester 11 (18) 8 (6) 31 (53) 5 (0) 43 (36) 311 (345) Liverpool 34 (34) 20 (20) 37 (37) 31 (36) 31 (28) 185 (190) Manchester 35 (36) 25 (32) 109 (107) 35 (47) 112 (77) 559 (593) Newcastle 52 (42) 38 (34) 26 (23) 57 (49) 56 (59) 199 (222) North Thames1 86 (85) 57 (31) - - - - - - - -

Royal Free - - - - 45 (42) 32 (26) 31 (43) 276 (275) Royal London - - - - 35 (35) 27 (28) 49 (41) 243 (225) WLRTC - - - - 71 (65) 11 (5) 72 (56) 499 (525)

Nottingham 10 (11) 15 (11) 33 (46) 31 (35) 15 (13) 156 (187) Oxford 29 (29) 21 (14) 97 (97) 54 (40) 53 (50) 293 (308) Plymouth 15 (11) 19 (29) 13 (9) 24 (46) 18 (12) 100 (79) Portsmouth 23 (20) 14 (12) 34 (36) 17 (12) 27 (17) 235 (231) Sheffield 10 (11) 12 (9) 26 (23) 13 (16) 22 (20) 203 (198) South Thames1 78 (64) 43 (35) - - - - - - - -

Guy's - - - - 108 (79) 74 (25) 94 (113) 397 (420) St George's - - - - 67 (32) 21 (13) 41 (50) 286 (307)

TOTAL 653 (612) 495 (419) 1181 (1118) 749 (674) 10682,4 (10093) 6348 (6633) WLRTC – West London Renal and Transplant Centre 1 Donor figures in this area cannot be linked to individual transplant centres due to shared retrieval areas. 2 Includes an additional 1 transplant performed at The London Clinic 3 Includes 2 domino donors 4 Includes 3 domino donors

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5.2 Transplant list The number of patients registered on the kidney or kidney and pancreas transplant list fell by 4% in the year: on 31 March 2013, 6,348 patients were registered as active, compared with 6,633 at the end of March 2012. The number of patients waiting for a kidney transplant represents 100 patients per million population (pmp). Of the 6,348 patients on the active transplant list at 31 March 2013, 208 required a kidney and pancreas transplant (193 at 31 March 2012) and 1 required a kidney, liver and pancreas. Additionally, 67 patients were registered for a pancreas only or pancreatic islet transplant (60 at 31 March 2012). The outcome of patients registered on the UK kidney and kidney/pancreas transplant list at 1 April 2012, or subsequently registered during the financial year, is shown in Table 5.2. A total of 3,267 patients joined the kidney transplant list last year, while a further 228 joined the kidney/pancreas transplant list.

Table 5.2 Kidney transplant list and new registrations in the UK,

1 April 2012 - 31 March 2013 Outcome of patient at 31 March 2013

Active and suspended patients at 1 April 2012

New registrations

in 2012-20131

TOTAL

N % N % N % Kidney transplant list Remained active/suspended 6195 68 2718 83 8913 72 Transplanted 2158 24 501 15 2659 22 Removed 4692 5 363 1 505 4 Died 253 3 12 0 265 2 TOTAL 9075 3267 12342

Kidney/pancreas transplant list Remained active/suspended 148 45 189 83 337 60 Transplanted 141 42 35 15 176 31 Removed 24 7 2 1 26 5 Died 19 6 2 1 21 4 TOTAL 332 228 560 1 Includes re-registrations for second or subsequent transplants 2 Includes 8 patients removed from kidney list and made active on kidney/pancreas list 3 Includes 7 patients removed from kidney list and made active on kidney/pancreas list

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An indication of outcomes for patients listed for a kidney transplant is summarised in Figure 5.2. This shows the proportion of patients transplanted or still waiting one, three and five years after joining the list. It also shows the proportion removed from the transplant list (typically because they become too unwell for transplant) and those dying while on the transplant list. Only 20% of patients are transplanted within one year, while five years after listing 64% of patients have received a transplant. The median (average) waiting time for a kidney only transplant is 1156 days for an adult patient and is shown by blood group in Table 5.3 and patient ethnicity in Table 5.4. Because of the need to match donor and recipient blood groups and tissue types, waiting times to transplant differ according to patient blood groups and ethnicity due to differences between the donor pool and patients awaiting a kidney transplant. Note that these waiting times are not adjusted for other relevant factors which may be influential and which may differ across blood or ethnic groups.

20

46

64

77

4116

2

712

25 8

0

10

20

30

40

50

60

70

80

90

100

1 year 3 years 5 yearsTime since listing

Per

cent

age Died

RemovedStill waitingTransplanted

Post-registration outcome for 3063 new adult kidney only registrations made in the UK, 1 April 2007 - 31 March 2008

Figure 5.2

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Table 5.3 Median waiting time to kidney only transplant in the UK, for patients registered 1 April 2006 - 31 March 2010 Blood group Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult O 4060 1369 1328 - 1410 A 3407 926 894 - 958 B 1266 1358 1290 - 1426 AB 377 610 529 - 691 TOTAL 9110 1156 1132 - 1180

Paediatric O 168 410 293 - 527 A 113 268 180 - 356 B 47 277 44 - 510 AB 14 504 294 - 714 TOTAL 342 342 262 - 422

Table 5.4 Median waiting time to kidney only transplant in the UK, for patients registered 1 April 2006 - 31 March 2010 Ethnicity Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult White 6904 1092 1065 - 1119 Asian 1276 1413 1335 - 1491 Black 689 1419 1315 - 1523 Other 241 1152 968 - 1336 TOTAL 9110 1156 1132 - 1180

Paediatric White 239 258 209 - 307 Asian 72 563 430 - 696 Black 21 566 350 - 782 Other 10 639 0 - 1316 TOTAL 342 342 262 - 422

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5.3 Donor and organ supply Of the 705 organ donors after brain death in the UK in 2012-2013, 653 (93%) were kidney donors. From these donors, 1,291 kidneys were retrieved. There were 495 kidney donors after circulatory death in 2012-2013. From these donors, 974 kidneys were retrieved. Table 5.5 shows this activity by donor country/ former Strategic Health Authority of donor's residence. No adjustments have been made for potential demographic differences in populations. The overall rate for kidney donors after brain death is 10.3 pmp, with rates across the former Strategic Health Authorities ranging from 6.2 to 16.2 pmp. The number of kidneys retrieved from donors after brain death in the UK is 20.3 pmp and varies from 12.1 to 29.2 pmp. The overall rate for kidney donors after circulatory death is 7.8 pmp, with rates across the former Strategic Health Authorities ranging from 5.7 to 13.1 pmp. The number of kidneys retrieved from donors after circulatory death is 15.3 pmp and varies from 11.5 to 26.3 pmp.

Table 5.5 Kidney donation and retrieval rates for deceased donors in the UK, 1 April 2012 - 31 March 2013, by Country/ Strategic Health Authority Country/Strategic Health kidney donors (pmp) Kidneys retrieved (pmp) Authority of residence DBD DCD DBD DCD

North East 42 (16.2) 29 (11.2) 76 (29.2) 56 (21.5) North West 63 (8.9) 47 (6.7) 126 (17.8) 90 (12.7) Yorkshire and The Humber 50 (9.5) 34 (6.4) 100 (18.9) 67 (12.7) North of England 155 (10.4) 110 (7.4) 302 (20.2) 213 (14.2)

East Midlands 28 (6.2) 36 (7.9) 55 (12.1) 71 (15.6) West Midlands 64 (11.4) 42 (7.5) 128 (22.8) 82 (14.6) East of England 68 (11.6) 77 (13.1) 135 (23.0) 154 (26.3) Midlands and East 160 (10.0) 155 (9.7) 318 (19.9) 307 (19.2)

London 73 (8.9) 47 (5.7) 146 (17.8) 94 (11.5)

South East Coast 49 (10.9) 30 (6.7) 96 (21.4) 59 (13.2) South Central 53 (12.7) 25 (6.0) 106 (25.4) 49 (11.7) South West 47 (8.9) 64 (12.1) 94 (17.7) 126 (23.8) South of England 149 (10.7) 119 (8.5) 296 (21.2) 234 (16.8)

England 537 (10.1) 431 (8.1) 1062 (20.0) 848 (16.0) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 3 (18.8) 0 (0.0) 6 (37.5) 0 (0.0)

Wales 34 (11.1) 18 (5.9) 68 (22.2) 36 (11.8)

Scotland 52 (9.9) 36 (6.9) 102 (19.4) 70 (13.3)

Northern Ireland 27 (14.9) 10 (5.5) 53 (29.3) 20 (11.0)

TOTAL 653 (10.3) 495 (7.8) 1291 (20.3) 974 (15.3) 1 Includes 13 donors where the hospital postcode was used in place of an unknown donor postcode

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5.4 Transplants The number of kidney transplants by recipient country/Strategic Health Authority of residence is shown in Table 5.6. No adjustments have been made for potential demographic differences in populations. The deceased donor transplant rate ranged from 20.7 to 38.4 pmp across Strategic Health Authorities and overall was 27.6 pmp. The living donor transplant rate ranged from 12.9 to 20.0 pmp across the Strategic Health Authorities and overall was 16.7 pmp.

Table 5.6 Kidney only transplant rates per million population (pmp), in the UK, 1 April 2012 - 31 March 2013, by country and English Strategic Health Authority Country/ Strategic Health DBD DCD TOTAL Living Authority of residence N (pmp) N (pmp) N (pmp) N (pmp)

North East 19 (7.3) 46 (17.7) 65 (25.0) 47 (18.1) North West 112 (15.9) 61 (8.6) 173 (24.5) 141 (20.0) Yorkshire and The Humber 97 (18.3) 75 (14.2) 172 (32.5) 68 (12.9) North of England 228 (15.3) 182 (12.2) 410 (27.4) 256 (17.1)

East Midlands 65 (14.3) 40 (8.8) 105 (23.1) 66 (14.5) West Midlands 84 (15.0) 32 (5.7) 116 (20.7) 92 (16.4) East of England 58 (9.9) 109 (18.6) 167 (28.5) 98 (16.7) Midlands and East 207 (12.9) 181 (11.3) 388 (24.2) 256 (16.0)

London 216 (26.3) 99 (12.1) 315 (38.4) 159 (19.4)

South East Coast 71 (15.8) 39 (8.7) 110 (24.6) 67 (15.0) South Central 68 (16.3) 54 (12.9) 122 (29.2) 70 (16.7) South West 76 (14.3) 56 (10.6) 132 (24.9) 70 (13.2) South of England 215 (15.4) 149 (10.7) 364 (26.1) 207 (14.8)

England 866 (16.3) 611 (11.5) 1477 (27.8) 878 (16.5) Isle of Man 1 (12.5) 0 (0.0) 1 (12.5) 1 (12.5) Channel Islands 3 (18.8) 2 (12.5) 5 (31.3) 3 (18.8)

Wales 50 (16.3) 51 (16.7) 101 (33.0) 52 (17.0)

Scotland 88 (16.8) 52 (9.9) 140 (26.7) 72 (13.7)

Northern Ireland 26 (14.4) 0 (0.0) 26 (14.4) 54 (29.8)

TOTAL1 1034 (16.3) 716 (11.3) 1750 (27.6) 1060 (16.7) 1 Excludes 8 recipients of a living donor kidney transplant who reside outside of the UK

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The number of kidney only transplants from deceased donors at each transplant centre is shown in Table 5.7 for adult patients only. Kidney transplants from donors after brain death include 4 en bloc kidneys and 9 double kidney transplants in 2012-2013 (4 and 4 in 2011-2012). Kidney transplants from donors after circulatory death include 5 en bloc and 43 double kidney transplants in 2012-2013 (0 and 35 in 2011-2012). This table excludes multi-organ transplants: 9 kidney and liver, 3 kidney and heart and 166 kidney and pancreas.

Table 5.7 Adult kidney only transplants from deceased donors in the UK, 1 April 2012 - 31 March 2013, by transplant centre/region Transplant 2011-2012 2012-2013 centre/region DBD DCD DBD DCD

Belfast 26 0 25 0 Birmingham 62 16 62 16 Bristol 21 32 46 26 Cambridge 34 68 31 99 Cardiff 36 64 40 44 Coventry 22 6 15 8 Edinburgh 41 20 21 23 Glasgow 57 24 65 29 Guys 48 16 90 63 Leeds 59 53 74 60 Leicester 53 0 31 5 Liverpool 37 36 37 31 Manchester 81 41 75 32 Newcastle 21 49 21 57 Royal Free 41 26 44 32 Royal London 35 28 35 27 Nottingham 31 35 26 29 Oxford 35 32 46 46 Plymouth 9 46 12 24 Portsmouth 36 12 34 17 Sheffield 23 16 26 13 St Georges 32 13 67 21 WLRTC 55 5 64 8

TOTAL 895 638 987 710 WLRTC – West London Renal Transplant Centre

Living donor kidney transplants increased by 6% to 1,068 in 2012-2013, representing 36% of the total kidney transplant programme. The total number of living donor adult transplants performed by each transplant centre is shown in Table 5.8. Also shown is the number as a percentage of patients listed at the end of the year, to indicate the size of the living donor programme relative to the centre's transplant list. Most living donor transplants are ‘directed’. This means that a kidney is donated to a specific recipient known to the donor – a close family member or friend. There has been a 2% increase in these transplants. In addition there are now a number of ‘non-directed’ living donor transplants (also known as altruistic donor transplants). Last year there were 76 such transplants – 69 donated a kidney to a recipient by the national Kidney Allocation Scheme for deceased donor kidneys (65 transplanted into an adult recipient and 4 transplanted into a paediatric recipient) and 7 donated a kidney to a recipient as part of an altruistic donor chain (all transplanted into an adult recipient).

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In 2012-2013, there were also 55 paired living kidney donor transplants. When a potential donor and recipient are biologically incompatible (blood group or tissue type), they may consider joining a list of others in the same situation with the hope that an exchange of kidneys between them can lead to a compatible living donor transplant. This is known as paired donation and most exchanges are between two pairs (ie two donors and their respective incompatible recipients), or between three pairs. Additionally pairs can also now donate as part of altruistic donor chains, which is where an altruistic donor chooses to participate in the paired scheme, rather than donating directly to the deceased donor list, and initiates a chain of transplants. There were 7 altruistic donor chains in 2012-2013, each resulting in two transplants (one for a paired recipient and one for a patient on the deceased donor list). As a percentage of the number of patients on the active transplant list at 31 March 2013, the number of living donor adult transplants in the year was 16% and ranged from 9% to 31% at individual transplant centres. The high rate for Coventry is at least partly attributable to their antibody incompatible kidney transplant programme; a number of patients are referred to Coventry for such transplants.

Table 5.8 Adult living donor kidney transplants in the UK, 1 April 2011 - 31 March 2013, and percentage of active transplant list at 31 March, by transplant centre/region

2011-2012 2012-2013 Transplant TOTAL TOTAL centre/ region

Directed Paired/ pooled

Non- directed

N % list

Directed Paired/pooled

Non- directed

N % list

Belfast 41 7 1 49 27 39 6 2 47 31 Birmingham 43 2 5 50 8 56 3 6 65 11 Bristol 33 1 2 36 10 29 1 2 32 9 Cambridge 43 3 1 47 21 42 1 2 45 21 Cardiff 37 0 1 38 21 40 1 1 42 29 Coventry 35 0 0 35 29 21 0 1 22 20 Edinburgh 24 0 0 24 13 22 3 4 29 13 Glasgow 26 1 1 28 9 36 1 1 38 12 Leeds 39 2 2 43 14 41 2 3 46 16 Leicester 32 3 1 36 10 37 3 3 43 14 Liverpool 27 0 1 28 15 25 2 4 31 17 Manchester 61 7 2 70 12 81 10 9 100 18 Newcastle 52 0 3 55 25 47 0 5 52 27 Royal Free 37 3 3 43 16 28 1 2 31 11 Royal London 39 1 1 41 18 47 1 1 49 20 WLRTC 54 2 0 56 11 58 8 6 72 14 Nottingham 10 1 1 12 7 11 0 3 14 10 Oxford 44 4 2 50 16 45 4 4 53 18 Plymouth 9 3 0 12 15 16 0 2 18 18 Portsmouth 14 2 1 17 7 22 1 4 27 11 Sheffield 20 0 0 20 10 21 0 1 22 11 Guy's 93 5 2 100 24 73 4 5 82 21 St George's 42 4 4 50 16 34 3 4 41 14

TOTAL 855 51 342 940 14 8721 55 753 10021 16 1 Includes 1 transplant performed at The London Clinic 2 Includes 2 domino donor transplants 3 Includes 3 domino donor transplants

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Non-directed, altruistic donor kidneys are matched to a suitable recipient on a national basis and thus are rarely used in the transplant centre responsible for the ‘work-up’ of the donor. The number of non-directed donors according to donor hospital (rather than transplant hospital) is shown in Table 5.9. Last year Portsmouth contributed 15 non-directed donors yet only received 4 such kidneys for transplant.

Table 5.9 Altruistic kidney donors in the UK, 1 April 2011 - 31 March 2013,

by donor centre 2011-2012 2012-2013 Donor centre N % N % Belfast 2 6 4 5 Birmingham 1 3 1 1 Bristol 3 9 3 4 Cambridge 1 3 1 1 Cardiff 1 3 0 0 Coventry 1 3 2 3 Edinburgh 1 3 5 7 Glasgow 1 3 0 0 Guy's 4 12 4 5 Leeds 2 6 7 9 Leicester 1 3 1 1 Liverpool 0 0 3 4 Manchester 5 15 8 11 Newcastle 1 3 4 5 Nottingham 0 0 1 1 Oxford 0 0 6 8 Plymouth 2 6 5 7 Portsmouth 2 6 15 20 St George’s 1 3 1 1 The Royal Free 3 9 5 7 WLRTC 2 6 0 0 Total 34 100 76 100 WLRTC – West London Renal and Transplant Centre

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The number of deceased donor and living donor kidney only transplants in paediatric patients (<18 years) performed by each paediatric transplant centre is shown in Table 5.10. There were 66 living donor transplants and 53 deceased donor transplants in paediatric patients in 2012-2013. This table excludes multi-organ transplants: 2 kidney and liver transplants in 2012-2013 (4 in 2011-2012). The paediatric transplant list fell by 16% from 88 patients at 31 March 2012 to 74 at the end of March 2013. Occasionally older paediatric patients are listed and/or transplanted at adult kidney transplant centres and these are indicated in Table 5.10. At 31 March 2013, there were approximately 29,000 recipients with a functioning kidney transplant (including multi-organ transplants) being followed-up as reported to the UK Transplant Registry.

Table 5.10 Paediatric patient kidney only transplants in the UK, 1 April 2011 - 31 March 2013, by transplant centre

2011-2012 2012-2013 Paediatric transplant centre DBD DCD

Living donor

TOTAL DBD DCD

Living donor

TOTAL

Belfast 1 0 3 4 1 0 3 4 Birmingham 3 0 7 10 4 3 8 15 Bristol 6 0 6 12 10 0 4 14 Glasgow 2 0 3 5 2 0 4 6 Great Ormond Street 8 1 21 30 10 0 13 23 Guy's 11 0 13 24 3 0 12 15 Leeds 13 0 3 16 3 1 4 8 Manchester 5 0 7 12 6 0 12 18 Newcastle 0 0 4 4 0 0 4 4 Nottingham 15 0 1 16 7 2 1 10 Adult centres 1 0 1 2 1 0 1 2

TOTAL 65 1 691 135 47 6 662 119 1 Includes 3 non-directed donor transplants 2 Includes 4 non-directed donor transplants

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Rates of pre-emptive kidney only transplantation are shown in Table 5.11. Of the 2,818 kidney only transplant recipients in 2012-2013, dialysis status at time of transplant was reported for 2,789 (99%). Of these 2,789 transplants, 601 (22%) were carried out in pre-dialysis patients. Pre-emptive transplants accounted for 40% of all paediatric kidney only transplants with reported dialysis status, compared with 21% of those in adults. Living donor transplants are more likely to be carried out before the need for dialysis than deceased donor transplants: 37% and 12% respectively. This is because a living donor transplant can often be carried out more quickly than a deceased donor kidney transplant as the latter often necessitates a long waiting time.

Table 5.11 Pre-emptive kidney only transplants in the UK, 1 April 2012 - 31 March 2013

Number of kidney onlytransplants

Number of transplants with known dialysis status at transplant

(% of all)

Percentage of patients transplanted prior to the

need for dialysis (of those with known

status) Adult Deceased donor transplant 1697 1685 (99.3) 11.7 Living donor transplant 1002 985 (98.3) 36.1

Paediatric Deceased donor transplant 53 53 (100.0) 32.1 Living donor transplant 66 66 (100.0) 47.0

The length of time that elapses between a kidney being removed from the donor to its transplantation into the recipient is called Cold Ischaemia Time (CIT). Generally, the shorter this time, the more likely the kidney is to work immediately and the better the long-term outcome. The factors which determine CIT include a) transportation of the kidney from the retrieval hospital to the hospital where the transplant is performed, b) the need to tissue type the donor and cross-match the donor and potential recipients, c) the occasional necessity of moving the kidney to another hospital if a transplant cannot go ahead, d) contacting and preparing the recipient for the transplant and e) access to the operating theatre. Median CITs are shown in addition to inter-quartile ranges in Table 5.12.

Table 5.12 Median cold ischaemia time for kidney only transplants in the UK, 1 April 2012 - 31 March 2013

Inter-quartile range2

Number of kidney only transplants1

Median (hours) Q1 Q3

Adult DBD donor transplant 987 15.0 12.0 18.0 DCD donor transplant 710 14.2 11.1 17.0 Total 1697 14.6 11.5 17.5

Paediatric DBD donor transplant

47 13.1 11.0 16.0

TOTAL 1744 14.6 11.5 17.4

1 Not all cold ischaemia times are reported 2 25% of times are shorter than Q1, 25% are longer than Q3

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Kidneys from donors after brain death are allocated on the basis of a national Kidney Allocation Scheme which incorporates HLA matching between donor and recipient. These HLA matches are based on four levels which are described in Table 5.13. Patients with 000 HLA-A, B, DR mismatch (Level 1) are prioritised in the schemes, whereas kidneys are rarely transplanted as a Level 4 match. More information about the allocation scheme can be found at www.odt.nhs.uk. Table 5.14 gives the HLA mismatch group for adult and paediatric patients for DBD donor transplants but also for DCD and living donor transplants. DCD kidneys are currently allocated according to local transplant centre policies and on a local basis and consequently the levels of HLA match are inferior. For living donor transplantation, many transplants have a less good HLA match between donor and recipient. Very often there is no genetic relationship between donor and recipient.

Table 5.13 HLA mismatch groups Level HLA mismatch summary HLA mismatch combinations included 1 000 000 2 [0 DR and 0/1 B] 100, 010, 110, 200, 210 3 [0 DR and 2 B] or [1 DR and 0/1 B] 020, 120, 220, 001, 101, 201, 011, 111, 211 4 [1 DR and 2 B] or [2 DR] 021, 121, 221, 002, 102, 202, 012, 112, 212, 022,

122, 222

Table 5.14 HLA matching for kidney only transplants in the UK,

1 April 2011 - 31 March 2013, DBD DCD Living N (%) N (%) N (%) Adult Level 1 186 (19) 22 (3) 116 (12) Level 2 343 (35) 159 (22) 150 (15) Level 3 432 (44) 422 (59) 422 (42) Level 4 26 (3) 107 (15) 312 (31) Unknown 2 Paediatric Level 1 7 (15) 0 (0) 7 (11) Level 2 34 (72) 2 (33) 20 (30) Level 3 6 (13) 2 (33) 38 (56) Level 4 0 (0) 2 (33) 1 (2)

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Often potential living donors and their recipients are HLA or blood group incompatible. Increasingly it is possible to proceed with transplantation across the incompatibilities with appropriate management. The number of HLA and ABO blood group incompatible transplants over the last ten years is shown in Figure 5.3. Of the 507 HLA incompatible (HLAi) transplants performed; 138 used kidneys from deceased donors and 369 used living donor kidneys while the vast majority of ABO incompatible (ABOi) transplants used living donor kidneys (423 of 430). Due to nature of reporting HLA incompatible transplants the numbers presented may be subject to change over time.

2

11

25

50

56

75

83

6662

26

14

25

46

73

84

78

99

3 3 5

1310

138

77

3

0

20

40

60

80

100

120

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013Year

Num

ber

HLAiABOiHLAi & ABOi

Incompatible kidney only transplants in the UK, 1 April 2003 - 31 March 2013Figure 5.3

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5.5 Demographic characteristics The age group, sex, ethnicity and blood group of deceased donors, transplant recipients and patients on the transplant list is shown in Table 5.15, with comparable information for living donors and transplants in Table 5.16. Note that all percentages quoted are based only on data where relevant information was available. Changes made to the Kidney Allocation Scheme in 2006 mean that tissue matching criteria between donor and recipient are less strict than previously and waiting time to transplant is now more important than it was in deciding kidney allocation. These changes have an indirect benefit for patients from ethnic minority groups, who are less often a good tissue match with the predominantly white donor pool. As a result, access to transplantation is becoming more equitable.

Table 5.15 Demographic characteristics of deceased kidney donors and transplant recipients, 1 April 2012 – 31 March 2013, and transplant list patients at 31 March Donors Transplant recipients Active transplant list

patients N (%) N (%) N (%)

Age group (years) 0 – 17 35 (3) 55 (3) 75 (1) 18 – 34 145 (13) 212 (11) 734 (12) 35 – 49 285 (25) 577 (30) 1875 (30) 50 – 59 296 (26) 507 (26) 1733 (27) 60 – 69 256 (22) 455 (24) 1446 (23) 70+ 131 (11) 124 (6) 485 (8) mean (SD) 51 (16) 50 (14) 51 (14)

Sex Male 613 (53) 1225 (63) 3691 (58) Female 535 (47) 703 (36) 2656 (42) Not reported 2 1

Ethnicity White 1097 (96) 1473 (76) 4386 (69) Asian 19 (2) 260 (13) 1074 (17) Black 18 (2) 146 (8) 617 (10) Chinese 4 (0) 22 (1) 90 (1) Other 9 (1) 24 (1) 108 (2) Not reported 1 5 73

Blood group O 510 (44) 812 (42) 3314 (52) A 467 (41) 771 (40) 1916 (30) B 125 (11) 248 (13) 972 (15) AB 46 (4) 99 (5) 146 (2)

Graft number First graft 1694 (88) 4876 (77) Re-graft 236 (12) 1472 (23)

TOTAL 1148 (100) 1930 (100) 6348 (100)

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Table 5.16 Demographic characteristics of living kidney donors and transplant recipients, 1 April 2012 - 31 March 2013 Donors Transplant recipients

N (%) N (%)

Age group (years) 0 - 17 0 (0) 66 (6) 18 - 34 206 (19) 276 (26) 35 - 49 409 (38) 332 (31) 50 - 59 254 (24) 215 (20) 60 - 69 176 (16) 151 (14) 70+ 23 (2) 28 (3) mean (SD) 47 (13) 43 (16)

Sex Male 528 (49) 652 (61) Female 539 (50) 415 (39) Not reported 1 1

Ethnicity White 913 (86) 877 (82) Asian 87 (8) 98 (9) Black 43 (4) 50 (5) Chinese 7 (1) 5 (0) Other 12 (1) 13 (1) Not reported 6 25

Blood group O 584 (55) 464 (43) A 356 (34) 435 (41) B 101 (10) 137 (13) AB 18 (2) 32 (3) Not reported 9

Graft number First graft 937 (88) Re-graft 131 (12)

TOTAL 1068 (100) 1068 (100)

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6 Pancreas Activity

Pancreas Activity Key messages

• A new National Pancreas Allocation Scheme was introduced on 1 December 2010

• The number of patients waiting on the pancreas transplant list increased by 9%

during the year, to 276 at 31 March 2013

• The number of pancreas donors after brain death increased by 11% to 359, and transplants from donors after brain death increased by 2% to 192

• The number of pancreas donors after circulatory death increased by 7% to 92,

while transplants from donors after circulatory death decreased by 20% to 41

• 30 islet transplants were made possible by the pancreas islet transplant programme

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6.1 Overview The number of patients registered on the active transplant list at 31 March for a pancreas only, simultaneous kidney/pancreas (SPK) and islet transplant has increased significantly over the last ten years from 98 patients in 2003 to 276 patients in 2013. The number of pancreas donors and transplants has also increased steadily from 91 donors resulting in 59 transplants in 2003-2004, to 451 donors and 233 transplants in 2012-2013. A summary of activity for deceased donor pancreas transplants and the transplant list for 1 April 2003 - 31 March 2013 is shown in Figure 6.1. A National Pancreas Allocation Scheme was introduced on 1 December 2010. Patients are prioritised according to a points system based on a range of clinical factors. A score is calculated for every potentially suitable patient on the national active transplant list and the pancreas is allocated preferentially to the patient with the most points. This differs from the previous system in which donor organs were allocated so that transplant centres selected suitable recipients rather than individual patients being identified centrally. Pancreases from donors after brain death and donors after circulatory death are allocated through this scheme. Patients listed for a vascularised pancreas or islet transplant are prioritised through one combined national transplant list. The scheme has reduced the incidence of long waiting patients and is improving equity in access to transplant irrespective of where in the UK each patient resides. Throughout this chapter, intestinal transplants involving a pancreas are not included in the pancreas transplant activity reported. Any pancreases retrieved and used for such transplants are however included in the pancreas donor activity. In 2012/2013 there were 8 intestinal transplants.

91

118

175

239

305

380 386406 409

451

59

86

127

192

245

204 200210

239 233

98

132145

206216

293

335322

253

276

0

50

100

150

200

250

300

350

400

450

500

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

Year

Num

ber

DonorsTransplantsTransplant list

Deceased pancreas and islet programme in the UK, 1 April 2003 - 31 March 2013 Number of donors, transplants and patients on the active transplant list at 31 March

Figure 6.1

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6.2 Transplant list Table 6.1 shows the number of patients on the active transplant lists at 31 March 2013 by centre. The number of patients registered on the pancreas transplant list increased by 9% in the year: on 31 March 2013, 276 patients were registered active, compared with 253 at the end of March 2012. Of the 276 patients on the active transplant list at 31 March 2013, 208 required a SPK transplant (193 at 31 March 2012), 37 (13%) patients required a pancreas only transplant (35 at 31 March 2012), 27 (10%) were registered for a pancreas islet transplant, 3 were registered for a liver and pancreas transplant and 1 was registered for a kidney, liver and pancreas. The outcome of patients registered on the UK pancreas transplant list at 1 April 2012, or subsequently registered during the financial year, is shown in Table 6.2. 56 patients joined the pancreas transplant list while 228 joined the list for kidney and pancreas. Patients listed for a routine islet transplant are generally waiting for their first islet graft. The majority of islet transplant recipients are likely to require more than one graft to complete their treatment. To optimise transplant outcome the follow-up graft should be performed within six to twelve months of the first. Patients requiring follow-up grafts are priority listed.

Table 6.1 Patients on the pancreas transplant lists at 31 March 2013 (2012) in the UK, by centre

Active transplant lists Centre Kidney/pancreas Pancreas alone Islet TOTAL

Routine Priority

Cambridge 27 (13) 4 (1) - - - - 31 (14) Cardiff 4 (2) 6 (5) - - - - 10 (7) Edinburgh 28 (21) 1 (0) 8 (0) 0 (3) 37 (24) Guys 29 (27) 5 (6) - - - (-) 34 (33) King's College - - - - 2 (0) 1 (0) 3 (0) Manchester 35 (46) 2 (4) 6 (4) 0 (0) 43 (54) Newcastle 9 (10) 4 (1) 3 (2) 1 (3) 17 (16) Oxford 67 (65) 15 (15) 1 (4) 4 (1) 87 (85) Royal Free - - - - 0 (4) 1 (3) 1 (7) WLRTC 10 (9) 3 (4) - - - - 13 (13)

TOTAL 2091 (193) 402 (363) 20 (14) 7 (10) 276 (253) 1 Includes one patient waiting for a kidney, pancreas and liver 2 Includes three patients waiting for a liver and pancreas 3 Includes one patient waiting for a liver and pancreas

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Table 6.2 Pancreas transplant list and new registrations in the UK,

1 April 2012 - 31 March 2013 Outcome of patient at 31 March 2013

Active and suspended patients at

1 April 2012

New registrations

in 2012-20131

TOTAL

N % N % N % Pancreas transplant list Remained active/suspended 104 68 37 66 141 67 Transplanted 30 19 14 25 44 21 Removed 172 11 1 2 18 9 Died 3 2 4 7 7 3 TOTAL 154 56 210 Kidney/pancreas transplant list Remained active/suspended 148 45 189 83 337 60 Transplanted 141 42 35 15 176 31 Removed 24 7 2 1 26 5 Died 19 6 2 1 21 4 TOTAL 332 228 560 1 Includes re-registrations for second or subsequent transplants 2 Includes 2 patients removed from pancreas list but active on kidney/pancreas list

An indication of longer term outcomes for patients listed for a pancreas or kidney/pancreas transplant are summarised in Figure 6.2. This shows the proportion of patients transplanted or still waiting six months, one year, two years and three years after joining the list. It also shows the proportion removed from the transplant list (typically because they become too unwell for transplant) and those dying while on the transplant list. 33% of patients are transplanted within one year, while three years after listing 72% of patients have received a transplant. The median (average) waiting time for a pancreas transplant is 359 days and is shown by blood group in Table 6.3 and ethnicity in Table 6.4. Note that these waiting times are not adjusted for other relevant factors which may be influential and which may differ across blood or ethnic groups.

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2533

54

72

72 6032

9

35

1014

2 4 5

0

10

20

30

40

50

60

70

80

90

100

6 months 1 year 2 years 3 yearsTime since listing

Per

cent

age Died

RemovedStill waitingTransplanted

Post-registration outcome for 285 new pancreas only and kidney/pancreas registrations made in the UK, 1 April 2009 - 31 March 2010

Figure 6.2

Table 6.3 Median waiting time to pancreas only and kidney/pancreas transplant in the UK, for patients registered 1 April 2007 - 31 March 2011 Blood group Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult O 572 418 368 - 468 A 502 311 253 - 369 B 108 264 196 - 332 AB 26 78 50 - 106

TOTAL 1208 359 323 - 395

Table 6.4 Median waiting time to pancreas only and kidney/pancreas transplant in the UK, for patients registered 1 April 2007 - 31 March 2011 Ethnicity Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult White 1108 369 331 - 407 Asian 59 370 285 - 455 Black 24 199 8 - 390 Other 17 188 141 - 235 TOTAL 1208 359 323 - 395

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6.3 Donor and organ supply Of the 705 organ donors after brain death in the UK in 2012-2013, 359 (51%) donated a pancreas. There were 92 pancreas donors after circulatory death in 2012-2013. Table 6.5 shows this activity by country/Strategic Health Authority of the donor's residence. No adjustments have been made for potential demographic differences in populations. The overall rate for pancreas donors after brain death is 5.7 pmp, with rates ranging from 3.4 to 9.2 pmp across the Strategic Health Authorities and for donors after circulatory death is 1.4 pmp, with rates ranging from 0.4 to 2.6 pmp across the Strategic Health Authorities.

Table 6.5 Pancreas donation rates for deceased donors in the UK, 1 April 2012 - 31 March 2013, by Country/Strategic Health Authority1 Country/ Strategic Health Pancreas donors (pmp) Authority of residence DBD DCD TOTAL

North East 24 (9.2) 1 (0.4) 25 (9.6) North West 37 (5.2) 6 (0.8) 43 (6.1) Yorkshire and The Humber 23 (4.3) 6 (1.1) 29 (5.5) North of England 84 (5.6) 13 (0.9) 97 (6.5)

East Midlands 16 (3.5) 9 (2.0) 25 (5.5) West Midlands 37 (6.6) 11 (2.0) 48 (8.6) East of England 40 (6.8) 15 (2.6) 55 (9.4) Midlands and East 93 (5.8) 35 (2.2) 128 (8.0)

London 37 (4.5) 13 (1.6) 50 (6.1)

South East Coast 33 (7.4) 2 (0.4) 35 (7.8) South Central 33 (7.9) 3 (0.7) 36 (8.6) South West 18 (3.4) 14 (2.6) 32 (6.0) South of England 84 (6.0) 19 (1.4) 103 (7.4)

England 298 (5.6) 80 (1.5) 378 (7.1) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 3 (18.8) 0 (0.0) 3 (18.8)

Wales 18 (5.9) 4 (1.3) 22 (7.2)

Scotland 27 (5.1) 7 (1.3) 34 (6.5)

Northern Ireland 13 (7.2) 1 (0.6) 14 (7.7)

TOTAL 359 (5.7) 92 (1.4) 451 (7.1) 1 Includes 9 donors where the hospital postcode was used in place of an unknown donor postcode

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6.4 Transplants The number of pancreas transplants by recipient country of residence/ Strategic Health Authority is shown in Table 6.6. No adjustments have been made for potential demographic differences in populations. For donors after brain death the transplant rate ranged from 1.1 to 5.3 pmp across Strategic Health Authorities and overall was 3.0 pmp. For donors after circulatory death the overall rate was 0.6 pmp and ranged from 0.0 to 1.3 pmp across Strategic Health Authorities.

Table 6.6 Pancreas transplant rates per million population (pmp), in the UK, 1 April 2012 - 31 March 2013, by country and English Strategic Health Authority Country/ Strategic Health DBD DCD TOTAL Authority of residence N (pmp) N (pmp) N (pmp)

North East 6 (2.3) 0 (0.0) 6 (2.3) North West 24 (3.4) 2 (0.3) 26 (3.7) Yorkshire and The Humber 6 (1.1) 1 (0.2) 7 (1.3) North of England 36 (2.4) 3 (0.2) 39 (2.6)

East Midlands 7 (1.5) 0 (0.0) 7 (1.5) West Midlands 23 (4.1) 4 (0.7) 27 (4.8) East of England 13 (2.2) 2 (0.3) 15 (2.6) Midlands and East 43 (2.7) 6 (0.4) 49 (3.1)

London 25 (3.0) 10 (1.2) 35 (4.3)

South East Coast 7 (1.6) 6 (1.3) 13 (2.9) South Central 14 (3.3) 4 (1.0) 18 (4.3) South West 28 (5.3) 2 (0.4) 30 (5.7) South of England 49 (3.5) 12 (0.9) 61 (4.4)

England 153 (2.9) 31 (0.6) 184 (3.5) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 0 (0.0) 0 (0.0) 0 (0.0)

Wales 10 (3.3) 8 (2.6) 18 (5.9)

Scotland 22 (4.2) 2 (0.4) 24 (4.6)

Northern Ireland 6 (3.3) 0 (0.0) 6 (3.3)

TOTAL 1911 (3.0) 41 (0.6) 2321 (3.7) 1 Excludes 1 recipient where the postcode was unknown

There were 233 deceased donor pancreas transplants in 2012-2013 representing a decrease of 3% on the 239 transplants performed in 2011-2012. Of these 233, 166 (71%) were SPK transplants, 37 (16%) were pancreas only transplants (pancreas alone (PTA) or pancreas after kidney (PAK)) and 30 (13%) were islet transplants. The number of transplants performed at each centre is shown in Table 6.7 by transplant type and Table 6.8 by donor type. Note that King's College and The Royal Free only perform islet transplants.

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The length of time that elapses between a pancreas being removed from the donor to its transplantation into the recipient is called the Cold Ischaemia Time (CIT). Generally, the shorter this time, the more likely the pancreas is to work immediately and the better the long-term outcome. The median CIT for a DBD donor whole pancreas transplant is 11.5 hours (Inter-Quartile (IQ) range 10.0 – 13.6) and for a DCD donor whole pancreas transplant is 11.2 hours (IQ range 9.7 – 13.3) and overall is 11.5 hours (IQ range 9.9 – 13.5). At 31 March 2013, there were approximately 1,500 recipients with a functioning pancreas transplant (including multi-organ transplants) being followed-up, as reported to the UK Transplant Registry.

Table 6.7 Pancreas transplants, 1 April 2012 - 31 March 2013 (2011-2012) by centre

Transplant type Centre SPK PTA PAK Islet1

Routine Priority

Bristol - - - - - - 1 (0) 0 (0) Cambridge 8 (16) 0 (0) 1 (0) - - - - Cardiff 10 (8) 2 (4) 4 (1) - - - - Edinburgh 20 (17) 0 (0) 0 (0) 5 (5) 5 (3) Guys 24 (23) 2 (2) 5 (1) - - - - King's College - - - - - - 1 (1) 0 (0) Manchester 31 (27) 0 (1) 2 (0) 0 (2) 1 (0) Newcastle 4 (2) 0 (0) 0 (3) 2 (5) 3 (5) Oxford 59 (70) 15 (15) 1 (3) 7 (5) 0 (1) Royal Free - - - - - - 3 (3) 2 (0) WLRTC 10 (10) 0 (0) 5 (6) - - - -

TOTAL 166 (173) 19 (22) 18 (14) 19 (21) 11 (9) WLRTC - West London Renal and Transplant Centre

Table 6.8 Pancreas transplants, 1 April 2012 - 31 March 2013 by centre Centre Transplant and donor type

SPK PTA Islet TOTAL DBD DCD DBD DCD DBD DCD DBD DCD

Bristol - - - - 1 0 1 0 Cambridge 8 0 1 0 - - 9 0 Cardiff 3 7 5 1 - - 8 8 Edinburgh 19 1 0 0 9 1 28 2 Guys 13 11 5 2 - - 18 13 King's College - - - - 1 0 1 0 Manchester 28 3 2 0 1 0 31 3 Newcastle 4 0 0 0 5 0 9 0 Oxford 51 8 14 2 5 2 70 12 Royal Free - - - - 5 0 5 0 WLRTC 7 3 5 0 - - 12 3

TOTAL 133 33 32 5 27 3 192 41 WLRTC - West London Renal and Transplant Centre

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6.5 Demographic characteristics The age group, sex, ethnicity and blood group of deceased donors, transplant recipients and patients on the transplant list is shown in Table 6.9.

Table 6.9 Demographic characteristics of deceased pancreas donors and transplant recipients, 1 April 2012 - 31 March 2013, and transplant list patients at 31 March Donors Transplant recipients Active transplant list

patients N (%) N (%) N (%)

Age group (years) 0 - 17 25 (6) 0 (0) 2 (1) 18 - 34 96 (21) 42 (18) 54 (20) 35 - 49 177 (39) 125 (54) 153 (55) 50 - 59 132 (29) 59 (25) 62 (22) 60 - 69 21 (5) 7 (3) 5 (2) mean (SD) 42 (13) 43 (9) 43 (9)

Sex Male 237 (53) 133 (57) 143 (52) Female 214 (47) 100 (43) 133 (48)

Ethnicity White 426 (94) 206 (88) 246 (89) Asian 6 (1) 13 (6) 11 (4) Black 12 (3) 12 (5) 9 (3) Chinese 2 (0) 0 (0) 0 (0) Other 5 (1) 0 (0) 6 (2) Not reported 2 - 4 -

Blood group O 212 (47) 96 (41) 169 (61) A 190 (42) 104 (45) 91 (33) B 35 (8) 25 (11) 14 (5) AB 14 (3) 8 (3) 2 (1)

Graft number First graft 210 (90) 243 (88) Re-graft 23 (10) 33 (12)

TOTAL 451 (100) 233 (100) 276 (100)

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7 Cardiothoracic Activity

Cardiothoracic Activity Key messages

• At 31 March 2013, there were 200 patients on the active heart transplant list, 226 on the lung list and 16 on the heart/lung list

• Of the 705 organ donors after brain death, 256 (36%) were cardiothoracic organ

donors

• The number of heart transplants from deceased donors increased by 5% to 145 this year; two thirds of these were urgent heart transplants

• The number of lung or heart/lung transplants from deceased donors increased

by 6% to 191

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7.1 Overview Last year the number of heart transplants increased by 5% to 145 and the number of lung or heart/lung transplants increased by 6% to 191. There were increases in both the heart and the lung transplant lists since March 2012. The number of patients registered on the active heart transplant list at year end has increased by 89% since 2004, while the number of patients registered for a lung or heart/lung transplant has decreased by 17% since 2004. A summary of the deceased donor cardiothoracic activity from 1 April 2003 to 31 March 2013 is shown in Figure 7.1 for heart activity and Figure 7.2 for lung activity. Donors who donate both heart and lung(s) are included in both figures, but heart/lung block transplants and patients active on the transplant list for a heart/lung block are only included in Figure 7.2.

180

166

140

157

127132

115126

136142

165

154

141

156

128 130120

131138

145

105 106110

8895 93

126 130

169

200

0

50

100

150

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250

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

Year

Num

ber

DonorsTransplantsTransplant list

Deceased donor heart programme in the UK, 1 April 2003 - 31 March 2013 Number of donors, transplants and patients on the active transplant list at 31 March

Figure 7.1

159150

141 141135

169 164

188 192207

156

135123

136122

146 151

172180

191

291

309 305291 287

229

266

225232

242

0

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2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013

Year

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ber

DonorsTransplantsTransplant list

Deceased donor lung and heart/lung programme in the UK, 1 April 2003 - 31 March 2013 Number of donors, transplants and patients on the active transplant list at 31 March

Figure 7.2

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7.2 Transplant list Table 7.1 shows the number of patients on the active transplant lists at 31 March 2013 by centre. The lung transplant list accounts for 51% of the patients waiting for a cardiothoracic transplant. Overall, Harefield has the largest cardiothoracic list. During 2012-2013, 259 patients joined the heart transplant list while 10 joined the heart/lung list and 252 joined the lung transplant list. Outcomes for patients on the list at 1 April 2012 and those joining the list during the year are shown in Table 7.2. An indication of longer term outcomes for adult patients listed for a cardiothoracic organ transplant is summarised in Figure 7.3 and Figure 7.4. This shows the proportion of patients transplanted or still waiting six months, one year, two years and three years after joining the non-urgent heart list or the lung list, respectively. It also shows the proportion removed from the transplant list and those dying while on the transplant list. Within six months of listing, 36% of non-urgent heart patients are transplanted while 12% have died while waiting. For patients listed for a lung transplant, only 32% are transplanted within six months, rising to 63% after three years. The patients removed from these lists may also subsequently have died.

Table 7.1 Patients on the cardiothoracic transplant lists at 31 March 2013 (2012) in the UK, by centre

Active transplant lists Centre Heart Heart/lung Lung TOTAL

Non-urgent Urgent Adult

Birmingham 17 (7) 2 (0) 0 (2) 20 (16) 39 (25) Glasgow 6 (8) 2 (1) 0 (0) 0 (0) 8 (9) Great Ormond Street 2 (1) 0 (0) 0 (0) 2 (0) 4 (1) Harefield 51 (39) 2 (3) 2 (2) 68 (66) 123 (110) Manchester 13 (16) 2 (1) 0 (0) 39 (24) 54 (41) Newcastle 37 (33) 4 (2) 2 (3) 55 (74) 98 (112) Papworth 44 (42) 4 (2) 10 (6) 29 (23) 87 (73)

TOTAL 170 (146) 16 (9) 14 (13) 213 (203) 413 (371) Paediatric

Great Ormond Street 7 (7) 3 (3) 2 (3) 11 (12) 23 (25) Newcastle 2 (1) 2 (3) 0 (0) 2 (1) 6 (5)

TOTAL 9 (8) 5 (6) 2 (3) 13 (13) 29 (30)

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Table 7.2 Cardiothoracic transplant lists and new registrations in the UK,

1 April 2012 - 31 March 2013 Outcome of patient at 31 March 2013

Active and suspended patients

at 1 April 2012

New registrations in 2012-20131

TOTAL

N % N % N % Heart transplant list Remained active/suspended 85 49 122 47 207 48 Transplanted 48 28 95 37 143 33 Removed 21 12 22 8 43 10 Died 20 11 20 8 40 9 TOTAL 174 259 433 Heart/lung transplant list Remained active/suspended 10 67 6 60 16 64 Transplanted2 2 13 3 30 5 20 Removed 2 13 1 10 3 12 Died 1 7 0 0 1 4 TOTAL 15 10 25 Lung transplant list Remained active/suspended 85 40 140 56 225 48 Transplanted 85 40 90 36 175 38 Removed 14 7 5 2 19 4 Died 28 13 17 7 45 10 TOTAL 212 252 464 1 Includes re-registrations for second or subsequent transplants 2 Heart, lung or heart/lung

3647 51 52

45 27 14 9

711

19 22

12 15 16 17

0

10

20

30

40

50

60

70

80

90

100

6 months 1 year 2 years 3 yearsTime since listing

Per

cent

age Died

RemovedStill waitingTransplanted

Post-registration outcome for 116 new non-urgent heart only registrations made in the UK, 1 April 2009 - 31 March 2010

Figure 7.3

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3246

61 63

5534

11 6

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12 16 21 22

0

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30

40

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100

6 months 1 year 2 years 3 yearsTime since listing

Per

cent

age Died

RemovedStill waitingTransplanted

Post-registration outcome for 258 new lung only registrations made in the UK, 1 April 2009 - 31 March 2010

Figure 4

Table 7.3 and Table 7.4 show the median waiting time to cardiothoracic transplant by blood group and ethnicity, respectively, for patients registered between April 2008 and March 2011. Median waiting time for adult non-urgent heart patients is 293 days overall, compared with 289 days for adult lung patients. The median waiting time for paediatric non-urgent heart patients is 129 days; this is not broken down by blood group or ethnicity due to low numbers. Paediatric recipients are aged less than 16 years at time of listing. Note that these waiting times are not adjusted for other relevant factors which may be influential and which may differ across blood or ethnic groups.

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Table 7.3 Median waiting time to cardiothoracic transplant in the UK, for patients registered 1 April 2008 - 31 March 2011 Blood group Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult non-urgent heart O1 108 1187 - A 100 147 79 - 215 B 29 191 108 - 274 AB 16 148 31 - 265 TOTAL 253 293 160 - 426

Paediatric non-urgent heart 49 129 0 - 429

Adult lung O 310 470 388 - 552 A 240 165 121 - 209 B 65 425 285 - 565 AB 23 65 0 - 154 TOTAL 638 289 247 - 331 1 Unable to estimate 95% confidence interval

Table 7.4 Median waiting time to cardiothoracic transplant in the UK, for patients registered 1 April 2008 - 31 March 2011 Ethnicity Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult non-urgent heart White 220 293 172 - 414 Asian 18 512 20 - 1004 Black 7 - - Other 8 - - TOTAL 253 293 160 - 426

Paediatric non-urgent heart 49 129 0 - 429

Adult lung White 613 286 240 - 332 Asian 13 299 95 - 503 Black 7 - - Other 5 - - TOTAL 638 289 247 - 331 Median waiting time not reported for fewer than 10 patients

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Table 7.5 Cardiothoracic organ donors in the UK, 1 April 2012 - 31 March 2013 (2011-2012), by age group and allocation zone

Type of cardiothoracic donor Allocation zone Heart only Heart & lung Lung(s) only TOTAL

DBD DCD Adult

Birmingham 18 (13) 7 (15) 14 (15) 7 (8) 46 (51) Glasgow 9 (1) 2 (3) 13 (6) 4 (2) 28 (12) Harefield 10 (9) 9 (5) 20 (23) 5 (2) 44 (39) Manchester 9 (9) 4 (6) 16 (17) 5 (2) 34 (34) Newcastle 12 (9) 11 (14) 29 (24) 8 (2) 60 (49) Papworth 20 (18) 18 (26) 22 (13) 8 (5) 68 (62)

TOTAL 78 (591) 51 (69) 114 (98) 37 (21) 280 (247) Paediatric

Birmingham 4 (1) 0 (1) 0 (1) 1 (0) 5 (3) Glasgow 0 (1) 1 (1) 0 (0) 0 (0) 1 (2) Harefield 3 (2) 0 (0) 0 (0) 0 (0) 3 (2) Manchester 1 (2) 0 (0) 0 (0) 0 (0) 1 (2) Newcastle 0 (0) 3 (0) 0 (0) 0 (0) 3 (0) Papworth 1 (3) 0 (0) 0 (0) 0 (1) 1 (4)

TOTAL 9 (9) 4 (2) 0 (1) 1 (1) 14 (13) Paediatric donors are aged under 16 years 1 Includes three domino heart donors

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7.3 Donor and organ supply The number of cardiothoracic organ donors classified by allocation zone of the donor hospital is summarised in Table 7.5. The numbers reflect the number of organs retrieved from within each zone (by any retrieval team) rather than the number of retrievals made by that centre. 37 of the 151 adult lung only donors were donors after circulatory death and there were no living donors. There were no domino heart donors. Of the 243 adult cardiothoracic donors after brain death, 32% donated only the heart, 21% heart and lung and 47% lung only. Of the 13 paediatric cardiothoracic donors after brain death, 69% donated only the heart and 31% heart and lung. Table 7.6 shows the number of organ donors after brain death identified in each allocation zone, the number that donated cardiothoracic organs and the number of organs retrieved. Of the 705 organ donors after brain death, 36% donated cardiothoracic organs. Overall, 95% of the 466 organs retrieved were transplanted: 100% of hearts and 92% of lungs.

Table 7.6 Cardiothoracic organ donation and retrieval rates from donors after brain death in the UK, 1 April 2012 - 31 March 2013, by donation zone

Number of donors Number of organs retrieved (used)

TOTAL retrieved

Allocation zone of donor hospital

DBD solid organ

Cardiothoracic Hearts Lungs (used)

Birmingham 125 43 29 (29) 41 (38) 70 (67) Glasgow 56 25 12 (12) 30 (24) 42 (36) Harefield 132 42 22 (22) 56 (54) 78 (76) Manchester 73 30 14 (14) 35 (33) 49 (47) Newcastle 125 55 26 (26) 82 (76) 108 (102) Papworth 194 61 39 (39) 80 (74) 119 (113)

TOTAL 705 256 142 (142) 324 (299) 466 (441)

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The rates per million population for cardiothoracic donors are shown in Table 7.7 by donor country/Strategic Health Authority of residence. No adjustments have been made for potential demographic differences in populations. The overall cardiothoracic donor rate was 4.6 pmp in 2012-2013 and varied across the Strategic Health Authorities from 2.9 pmp to 8.5 pmp, while the rate in Northern Ireland was 9.4 pmp.

Table 7.7 Cardiothoracic deceased donor rates in the UK, 1 April 2012 - 31 March 2013, by Country/Strategic Health Authority1 Country/ Heart (pmp) Lungs (pmp) Total (pmp) Strategic Health Authority DBD DBD DCD

North East 9 (3.5) 14 (5.4) 4 (1.5) 22 (8.5) North West 11 (1.6) 20 (2.8) 5 (0.7) 32 (4.5) Yorkshire and The Humber 12 (2.3) 16 (3.0) 1 (0.2) 23 (4.3) North of England 32 (2.1) 50 (3.3) 10 (0.7) 77 (5.2)

East Midlands 7 (1.5) 5 (1.1) 3 (0.7) 13 (2.9) West Midlands 15 (2.7) 15 (2.7) 1 (0.2) 26 (4.6) East of England 15 (2.6) 19 (3.2) 4 (0.7) 31 (5.3) Midlands and East 37 (2.3) 39 (2.4) 8 (0.5) 70 (4.4)

London 14 (1.7) 10 (1.2) 4 (0.5) 24 (2.9)

South East Coast 12 (2.7) 17 (3.8) 0 (0.0) 20 (4.5) South Central 9 (2.2) 14 (3.3) 1 (0.2) 21 (5.0) South West 10 (1.9) 7 (1.3) 6 (1.1) 20 (3.8) South of England 31 (2.2) 38 (2.7) 7 (0.5) 61 (4.4)

England 114 (2.1) 137 (2.6) 29 (0.5) 232 (4.4) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)

Wales 10 (3.3) 6 (2.0) 2 (0.7) 16 (5.2)

Scotland 12 (2.3) 16 (3.0) 4 (0.8) 29 (5.5)

Northern Ireland 6 (3.3) 10 (5.5) 3 (1.7) 17 (9.4)

TOTAL 142 (2.2) 169 (2.7) 38 (0.6) 294 (4.6) 1 Includes 4 donors where the hospital postcode was used in place of an unknown postcode

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7.4 Transplants The number of cardiothoracic transplants by recipient country/Strategic Health Authority of residence are shown in Table 7.8. No adjustments have been made for potential demographic differences in populations. The transplant rate ranged from 2.5 to 9.6 pmp across Strategic Health Authorities and overall was 5.2 pmp. Lung transplants include the small number of heart/lung transplants performed.

Table 7.8 Cardiothoracic transplant rates per million population (pmp) in the UK, 1 April 2012 - 31 March 2013, by Country/ Strategic Health Authority Country/ Heart (pmp) Lungs (pmp) Total (pmp) Strategic Health Authority DBD DBD DCD

North East 13 (5.0) 8 (3.1) 4 (1.5) 25 (9.6) North West 21 (3.0) 21 (3.0) 2 (0.3) 44 (6.2) Yorkshire and The Humber 8 (1.5) 8 (1.5) 1 (0.2) 17 (3.2) North of England 42 (2.8) 37 (2.5) 7 (0.5) 86 (5.8)

East Midlands 10 (2.2) 11 (2.4) 0 (0.0) 21 (4.6) West Midlands 17 (3.0) 14 (2.5) 1 (0.2) 32 (5.7) East of England 13 (2.2) 22 (3.8) 3 (0.5) 38 (6.5) Midlands and East 40 (2.5) 47 (2.9) 4 (0.2) 91 (5.7)

London 10 (1.2) 16 (2.0) 4 (0.5) 30 (3.7)

South East Coast 6 (1.3) 2 (0.4) 3 (0.7) 11 (2.5) South Central 9 (2.2) 10 (2.4) 3 (0.7) 22 (5.3) South West 12 (2.3) 11 (2.1) 6 (1.1) 29 (5.5) South of England 27 (1.9) 23 (1.6) 12 (0.9) 62 (4.4)

England 119 (2.2) 123 (2.3) 27 (0.5) 269 (5.1) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)

Wales 5 (1.6) 6 (2.0) 1 (0.3) 12 (3.9)

Scotland 13 (2.5) 15 (2.9) 4 (0.8) 32 (6.1)

Northern Ireland 5 (2.8) 8 (4.4) 2 (1.1) 15 (8.3)

TOTAL1 1422 (2.2) 152 (2.4) 34 (0.5) 328 (5.2) 1 Excludes 7 recipients who reside outside of the UK (2 DBD heart, 5 DBD lung) 2 Excludes 1 recipient where the postcode was unknown

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Table 7.9 shows cardiothoracic transplant activity for each centre. In 2012-2013, a total of 336 transplants were carried out, an increase of 5% on 2011-2012. Of these, 43% were deceased donor heart transplants. The 185 adult lung transplants include 34 (18%) from donors after circulatory death.

Table 7.9 Cardiothoracic transplants, 1 April 2012 - 31 March 2013 (2011-2012), by age group and centre Transplant centre Transplant type TOTAL

Heart Heart/ Lung(s) Non-urgent Urgent lung DBD DCD

Adult

Birmingham 8 (12) 12 (10) 0 (0) 15 (15) 1 (0) 36 (37)Glasgow 4 (5) 5 (4) 0 (0) 0 (0) 0 (0) 9 (9)Great Ormond Street 0 (1) 1 (0) 0 (0) 1 (1) 0 (0) 2 (2)Harefield 7 (3) 14 (6) 0 (0) 34 (39) 14 (12) 69 (60)Manchester 8 (6) 14 (12) 0 (0) 24 (22) 2 (4) 48 (44)Newcastle 2 (8) 20 (9) 1 (0) 46 (43) 12 (2) 81 (62)Papworth 11 (12) 15 (20) 2 (5) 31 (30) 5 (3) 64 (70)

TOTAL 40 (471) 81 (61) 3 (5) 151 (150) 34 (21) 309 (284) Paediatric

Glasgow 0 (0) 1 (0) 0 (0) 0 (0) 0 (0) 1 (0)Great Ormond Street 1 (5) 8 (13) 0 (0) 2 (3) 0 (0) 11 (21)Newcastle 1 (1) 13 (14) 0 (0) 1 (1) 0 (0) 15 (16)

TOTAL 2 (6) 22 (27) 0 (0) 3 (4) 0 (0) 27 (37) Paediatric recipients are aged under 16 years at time of transplant 1 Includes 3 domino donor transplants

There were 81 adult urgent heart transplants in 2012-2013, representing 67% of all adult heart transplants (56% in 2011-2012). There were 22 paediatric urgent heart transplants in 2012-2013, representing 92% of all paediatric heart transplants (82% in 2011-2012). A small number of hearts and lungs were imported from outside the UK for transplantation in the UK: 2 hearts from the Republic of Ireland (ROI) and 5 from elsewhere. The length of time that elapses between cardiothoracic organs being removed from the donor to their transplantation into the recipient is called the Cold Ischaemia Time (CIT). Generally, the shorter this time, the more likely the organ is to work immediately and the better the long-term outcome. The median CIT for a heart transplant is 3.1 hours (Inter-Quartile (IQ) range 2.5 – 3.7). The median CIT for DBD donor lung transplant is 5.0 hours (IQ range 4.1 – 6.0), for DCD donor lung transplant is 6.7 hours (IQ range 4.8 – 7.3) and overall is 5.1 hours (IQ range 4.2 – 6.3). At 31 March 2013 there were approximately 3,700 recipients with a functioning cardiothoracic organ transplant being followed-up as reported to the UK Transplant Registry.

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7.5 Demographic characteristics The age group, sex, ethnicity and blood group of deceased donors, transplant recipients and patients on the transplant list is shown in Table 7.10.

Table 7.10 Age of deceased cardiothoracic donors and transplant recipients 1 April 2012 - 31 March 2013, and transplant list patients at 31 March in the UK Donors Transplant recipients Active transplant list

patients N (%) N (%) N (%)

Age group (years) 0 - 17 20 (7) 31 (9) 38 (9) 18 - 34 56 (19) 79 (24) 82 (19) 35 - 49 114 (39) 68 (20) 115 (26) 50 - 59 82 (28) 109 (32) 124 (28) 60 - 69 22 (7) 48 (14) 83 (19) 70+ 0 (0) 1 (0) 0 (0) mean (SD) 42 (14) 42 (18) 44 (17)

Sex Male 150 (51) 215 (64) 256 (58) Female 144 (49) 121 (36) 186 (42)

Ethnicity White 279 (95) 311 (93) 403 (91) Asian 5 (2) 17 (5) 23 (5) Black 6 (2) 4 (1) 8 (2) Chinese 0 (0) 2 (1) 1 (0) Other 3 (1) 2 (1) 7 (2) Not reported 1

Blood group O 142 (48) 121 (36) 262 (59) A 125 (43) 160 (48) 136 (31) B 23 (8) 41 (12) 35 (8) AB 4 (1) 14 (4) 9 (2)

Graft number First graft 332 (99) 437 (99) Re-graft 4 (1) 5 (1)

TOTAL 294 (100) 336 (100) 442 (100)

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8 Liver Activity

Liver Activity Key messages

• The number of patients on the active liver transplant list at 31 March 2013 was 494, a decrease of 11% from 2012

• The number of liver donors after brain death increased by 6% to 640, and

transplants from donors after brain death increased by 7% to 648

• The number of liver donors after circulatory death increased by 4% to 185, and transplants from donors after circulatory death increased by 3% to 136

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8.1 Overview The number of deceased liver donors and transplants in the UK in the last ten years is shown in Figure 8.1. Until this year, there had been a steady increase in the number of patients registered on the active transplant list at 31 March, and there has been a recent increase in the numbers of donors and transplants.

668637

611636 632

676706 712

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Year

Num

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DonorsTransplantsTransplant list

Deceased donor liver programme in the UK, 1 April 2003 - 31 March 2013 Number of donors, transplants and patients on the active transplant list at 31 March

Figure 8.1

Intestinal transplants that used a liver are not included in the liver activity reported. However, any livers retrieved and used for such transplants are included in the liver donor activity. Intestinal transplant activity is reported in Chapter 9. The number of deceased donors, deceased and living donor transplants, and patients on the active transplant list, by centre, is shown in Table 8.1. The numbers of liver donors reflect the number of organs retrieved from within each zone (by any retrieval team) rather than the number of retrievals made by that centre. In 2012-2013, 825 organ donors donated their liver for transplant: 640 donors after brain death and 185 donors after circulatory death. There were 494 patients on the active transplant list at 31 March 2013, a decrease of 11% from 2012. Overall, the number of liver transplants from donors after brain death increased by 7% to 648, and the number of transplants from donors after circulatory death increased by 3% to 136, compared with the previous financial year. Additionally, there were 31 living liver lobe donor transplants in NHS Group 1 (17) and Group 2 (14) paediatric and adult recipients, and 2 domino donor transplants in NHS Group 1 adult recipients. One of the living donors was an altruistic non-directed donor. There were 78 adult super-urgent transplants in 2012-2013, representing 11% of all adult transplants. There were 16 paediatric super-urgent transplants in 2012-2013, representing 20% of all paediatric transplants. Patients are prioritised as super-urgent if they require a new liver as soon as possible, due to rapid failure of the native organ. Other patients are referred to as elective.

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Table 8.1 Deceased and living liver donors and transplants, 1 April 2012 - 31 March 2013 (2011-2012) and transplant list patients at 31 March 2013 (2012) in the UK, by age group and centre Allocation zone/ transplant

Deceased donors Deceased transplants Living donortransplants

Active transplant list

centre DBD DCD TOTAL DBD DCD TOTAL Adult

Birmingham 139 (115) 53 (55) 192 (170) 124 (114) 49 (33) 173 (147) 2 (1) 76 (118) Cambridge 87 (91) 24 (20) 111 (111) 72 (65) 13 (21) 85 (86) 0 (0) 46 (43) Edinburgh 79 (85) 15 (14) 94 (99) 79 (86) 9 (9) 88 (95) 0 (1) 47 (55) King's College 150 (134) 44 (53) 194 (187) 124 (113) 25 (44) 149 (157) 6 (9) 108 (123) Leeds 79 (76) 27 (17) 106 (93) 73 (68) 22 (7) 95 (75) 1 (3) 88 (87) Newcastle 45 (34) 5 (5) 50 (39) 40 (36) 1 (3) 41 (39) 0 (0) 22 (33) Royal Free 45 (51) 13 (11) 58 (62) 61 (49) 13 (11) 74 (60) 2 (3) 75 (54)

TOTAL 624 (586) 181 (175) 805 (761) 573 (531) 132 (128) 705 (659) 112 (17)3 462 (513) Paediatric

Birmingham 6 (1) 2 (0) 8 (1) 28 (26) 1 (1) 29 (27) 2 (2) 8 (15) Cambridge 2 (2) 0 (0) 2 (2) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Edinburgh 2 (4) 0 (1) 2 (5) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) King's College 3 (7) 1 (2) 4 (9) 35 (37) 3 (3) 38 (40) 14 (17) 19 (15) Leeds 1 (4) 1 (0) 2 (4) 12 (13) 0 (0) 12 (13) 6 (7) 4 (10) Newcastle 1 (0) 0 (0) 1 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Royal Free 1 (0) 0 (0) 1 (0) 0 (0) 0 (0) 0 (0) 0 (0) 1 (0)

TOTAL 16 (18) 4 (3) 20 (21) 75 (76) 4 (4) 79 (80) 224 (26)5 32 (40) 1 Includes donors whose livers were retrieved by other teams 2 Includes 4 and 5 living liver lobe transplants, and 2 and 0 domino transplants in NHS Group 1 and Group 2 recipients, respectively 3 Includes 7 and 6 living liver lobe transplants, and 4 and 0 domino transplants in NHS Group 1 and Group 2 recipients, respectively 4 Includes 12 and 9 living liver lobe transplants, and 1 and 0 altruistic donor transplants in NHS Group 1 and Group 2 recipients, respectively 5 Includes 18 and 7 living liver lobe transplants, and 1 and 0 domino transplants in NHS Group 1 and Group 2 recipients, respectively

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8.2 Transplant list During 2012-2013, 998 patients joined the liver transplant list. Outcomes for patients on the list at 1 April 2012 and those joining the list during the year are shown in Table 8.2. Of the 998 new registrations, 125 (12%) were super-urgent.

Table 8.2 Liver transplant list and new registrations in the UK,

1 April 2012 – 31 March 2013 Outcome of patient at 31 March 2013

Active and suspended patients at

1 April 2012

New registrations in

2012-20131

TOTAL

N % N % N %

Remained active/suspended 145 26 352 35 497 32 Transplanted 283 51 534 54 817 53 Removed 91 16 61 6 152 10 Died 33 6 51 5 84 5 TOTAL 552 998 1550 1 Includes re-registrations for second or subsequent transplants

An indication of longer term outcomes for patients listed for a liver transplant is summarised in Figure 8.2. This shows the proportion of patients transplanted or still waiting six months, one year and two years after joining the transplant list. It also shows the proportion removed from the transplant list and those dying while on the transplant list (which includes those patients removed due to condition deteriorated). At one year post-registration, 64% of patients had received a liver transplant while 12% of patients had died whilst waiting or had been removed due to their condition deteriorating. 6% had been removed for other reasons such as the patient's condition improving, as a result of non-compliance or at the request of the patient or family.

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RemovedStill waitingTransplanted

Post-registration outcome for 1023 new elective liver only registrations made in the UK, 1 April 2010 - 31 March 2011

Figure 8.2

*Removals due to condition deteriorating

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Table 8.3 and Table 8.4 shows the median waiting time to liver transplant for adult and paediatric elective registrations, separately, including a breakdown by blood group and ethnicity for adult elective registrations only. On average, adult patients wait 147 days for a transplant while paediatric patients wait an average of 72 days. Note that these waiting times are not adjusted for other relevant factors which may be influential and which may differ across blood or ethnic groups.

Table 8.3 Median waiting time to liver transplant in the UK, for patients registered 1 April 2008 - 31 March 2011 Blood group Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult O 1144 199 180 - 218 A 940 97 85 - 109 B 328 252 194 - 310 AB 113 58 33 - 83 TOTAL 2525 147 137 - 157

Paediatric 206 72 53 - 91

Table 8.4 Median waiting time to liver transplant in the UK, for patients registered 1 April 2008 - 31 March 2011 Ethnicity Number of patients Waiting time (days)

registered Median 95% Confidence interval Adult White 2199 145 134 - 156 Asian 207 144 103 - 185 Black 55 169 97 - 241 Other 61 217 55 - 379 TOTAL 2525 147 137 - 157

Paediatric 206 72 53 - 91

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8.3 Donor and organ supply Of the 1,212 organ donors, 825 (68%) donated their liver and 718 (87%) of these donated livers were transplanted; see Table 8.5. Of livers retrieved from donors after brain death and donors after circulatory death, 91% and 74% were transplanted, respectively.

Table 8.5 Deceased liver donation and retrieval in the UK, 1 April 2012 - 31 March 2013, by allocation zone Allocation Number of donors Number of livers retrieved (used) zone Solid organ Liver

DBD DCD TOTAL DBD DCD TOTAL DBD DCD TOTAL

Birmingham 158 114 272 145 55 200 145 (134) 55 (49) 200 (183) Cambridge 97 92 189 89 24 113 89 (80) 24 (16) 113 (96) Edinburgh 93 55 148 81 15 96 81 (75) 15 (13) 96 (88) King's College 159 103 262 153 45 198 153 (136) 45 (25) 198 (161) Leeds 97 76 173 80 28 108 80 (73) 28 (22) 108 (95) Newcastle 51 36 87 46 5 51 46 (43) 5 (3) 51 (46) Royal Free 50 31 81 46 13 59 46 (41) 13 (8) 59 (49)

TOTAL 705 507 1212 640 185 825 640 (582) 185 (136) 825 (718)

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The rates per million population (pmp) for liver donors are shown in Table 8.6 by donor country/Strategic Health Authority of residence. No adjustments have been made for potential demographic differences in populations. The overall deceased liver donor rate was 13.0 pmp in 2012-2013 and varied across the Strategic Health Authorities from 8.6 pmp to 16.2 pmp.

Table 8.6 Liver donor rates in the UK, 1 April 2012 - 31 March 2013, by Country/Strategic Health Authority1 Country/ Deceased donors (pmp) Strategic Health Authority DBD DCD Total

North East 39 (15.0) 3 (1.2) 42 (16.2) North West 56 (7.9) 18 (2.5) 74 (10.5) Yorkshire and The Humber 46 (8.7) 14 (2.6) 60 (11.3) North of England 141 (9.4) 35 (2.3) 176 (11.8)

East Midlands 29 (6.4) 10 (2.2) 39 (8.6) West Midlands 66 (11.8) 23 (4.1) 89 (15.9) East of England 67 (11.4) 23 (3.9) 90 (15.4) Midlands and East 162 (10.1) 56 (3.5) 218 (13.6)

London 72 (8.8) 20 (2.4) 92 (11.2)

South East Coast 52 (11.6) 11 (2.5) 63 (14.1) South Central 57 (13.6) 10 (2.4) 67 (16.0) South West 47 (8.9) 30 (5.7) 77 (14.5) South of England 156 (11.2) 51 (3.7) 207 (14.8)

England 531 (10.0) 162 (3.1) 693 (13.0) Isle of Man 0 (0.0) 0 (0.0) 0 (0.0) Channel Islands 3 (18.8) 0 (0.0) 3 (18.8)

Wales 35 (11.4) 9 (2.9) 44 (14.4)

Scotland 50 (9.5) 12 (2.3) 62 (11.8)

Northern Ireland 21 (11.6) 2 (1.1) 23 (12.7)

TOTAL 640 (10.1) 185 (2.9) 825 (13.0) 1 Includes 9 donors where the hospital postcode was used in place of an unknown donor postcode

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8.4 Transplants The number of liver transplants by recipient country/Strategic Health Authority of residence are shown in Table 8.7. No adjustments have been made for potential demographic differences in populations. The deceased donor transplant rate ranged from 9.8 to 15.7 pmp across the Strategic Health Authorities and overall was 12.1 pmp. The number of whole, reduced and split liver transplants by urgency status of the transplant (elective, super-urgent) in 2012-2013 is shown in Table 8.8. The term 'reduced' is used when only one lobe of the liver is transplanted and the term 'split' applies when both lobes of the liver are transplanted into two different recipients. Overall, the number of deceased donor liver transplants increased by 6% in 2012-2013. There were 784 deceased donor liver transplants performed in 2012-2013: 663 whole liver, including 8 liver and kidney; and 121 deceased liver lobe, including 3 liver and kidney. Split liver transplants accounted for 93% of liver lobe transplant activity.

Table 8.7 Liver transplant rates per million population (pmp) in the UK, 1 April 2012 - 31 March 2013, by Country/ Strategic Health Authority

Deceased transplants (pmp) Living transplants

Country/ Strategic Health Authority

DBD DCD Total (pmp)

North East 35 (13.5) 1 (0.4) 36 (13.8) 0 (0.0) North West 61 (8.6) 14 (2.0) 75 (10.6) 2 (0.3) Yorkshire and The Humber 42 (7.9) 11 (2.1) 53 (10.0) 3 (0.6) North of England 138 (9.2) 26 (1.7) 164 (11.0) 5 (0.3)

East Midlands 38 (8.4) 10 (2.2) 48 (10.6) 1 (0.2) West Midlands 69 (12.3) 19 (3.4) 88 (15.7) 1 (0.2) East of England 59 (10.1) 9 (1.5) 68 (11.6) 1 (0.2) Midlands and East 166 (10.4) 38 (2.4) 204 (12.7) 3 (0.2)

London 78 (9.5) 22 (2.7) 100 (12.2) 2 (0.2)

South East Coast 44 (9.8) 9 (2.0) 53 (11.8) 2 (0.4) South Central 35 (8.4) 6 (1.4) 41 (9.8) 0 (0.0) South West 51 (9.6) 12 (2.3) 63 (11.9) 1 (0.2) South of England 130 (9.3) 27 (1.9) 157 (11.2) 3 (0.2)

England 512 (9.6) 113 (2.1) 625 (11.8) 13 (0.2) Isle of Man 2 (25.0) 0 (0.0) 2 (25.0) 0 (0.0) Channel Islands 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)

Wales 18 (5.9) 9 (2.9) 27 (8.8) 1 (0.3)

Scotland 80 (15.2) 9 (1.7) 89 (17.0) 2 (0.4)

Northern Ireland 19 (10.5) 3 (1.7) 22 (12.2) 0 (0.0)

TOTAL1 631 (9.9) 134 (2.1) 765 (12.1) 16 (0.3) 1 Excludes 36 recipients who reside outside the UK (17 DBD, 2 DCD, 17 living)

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Table 8.8 Deceased liver transplants performed in the UK, 1 April 2011 - 31 March 2013

2011 - 2012 2012 - 2013 Transplant centre

Whole liver

Reduced liver

Split liver

TOTAL Whole liver

Reduced liver

Split liver

TOTAL

E SU E SU E SU E SU E SU E SU E SU E SU

Birmingham 115 21 1 0 36 1 152 22 151 14 0 1 31 5 182 20 Cambridge 69 12 0 0 5 0 74 12 70 13 0 0 2 0 72 13 Edinburgh 76 11 0 0 8 0 84 11 70 12 0 0 6 0 76 12 King's College 134 19 5 6 31 2 170 27 124 16 3 4 36 4 163 24 Leeds 64 9 0 2 10 3 74 14 81 8 1 0 16 1 98 9 Newcastle 32 4 0 0 3 0 35 4 34 3 0 0 4 0 38 3 Royal Free 50 7 0 0 3 0 53 7 54 13 0 0 7 0 61 13

TOTAL 540 83 6 8 96 6 642 97 584 79 4 5 102 10 690 94 E=Elective, SU=Super-urgent Birmingham, King's College and Leeds transplant paediatric patients

The length of time that elapses between a liver being removed from the donor to its transplantation into the recipient is called the Cold Ischaemia Time (CIT). Generally, the shorter this time, the more likely the liver is to work immediately and the better the long-term outcome. The median CIT for a DBD donor liver transplant is 8.8 hours (Inter-Quartile (IQ) range 7.2 – 10.5) and for a DCD donor liver transplant is 7.0 hours (IQ range 6.1 – 8.0) and overall is 8.3 hours (IQ range 6.8 – 10.0). At 31 March 2013 there were approximately 8,800 recipients with a functioning liver transplant (or multi-organ including the liver) being followed-up as reported to the UK Transplant Registry.

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8.5 Demographic characteristics The age group, sex, ethnicity and blood group of liver donors, transplant recipients and transplant list patients is shown in Table 8.9.

Table 8.9 Age of deceased liver donors and transplant recipients 1 April 2012 - 31 March 2013, and transplant list patients at 31 March in the UK Donors Transplant recipients Active transplant list

patients N (%) N (%) N (%)

Age group (years) 0 - 17 30 (4) 83 (11) 35 (7) 18 - 34 115 (14) 74 (9) 40 (8) 35 - 49 225 (27) 182 (23) 126 (26) 50 - 59 213 (26) 258 (33) 164 (33) 60 - 69 175 (21) 181 (23) 126 (26) 70+ 67 (8) 6 (1) 3 (1) mean (SD) 50 (16) 46 (18) 48 (16)

Sex Male 428 (52) 483 (62) 287 (58) Female 397 (48) 301 (38) 206 (42)

Ethnicity White 776 (94) 666 (85) 409 (83) Asian 19 (2) 76 (10) 46 (9) Black 17 (2) 17 (2) 19 (4) Chinese 3 (0) 8 (1) 3 (1) Other 10 (1) 16 (2) 15 (3) Not reported 1 2

Blood group O 366 (44) 306 (39) 309 (63) A 340 (41) 341 (43) 118 (24) B 86 (10) 95 (12) 64 (13) AB 33 (4) 42 (5) 3 (1)

Graft number First graft 713 (91) 452 (91) Re-graft 71 (9) 42 (9)

TOTAL 825 (100) 784 (100) 494 (100)

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9 Intestinal Activity

Intestinal Activity Key messages

• 15 patients were registered for an intestinal transplant in 2012-2013 (13 adults, 2 paediatric patients)

• 14 intestinal transplants were carried out in 2012-2013 (22 in the previous year)

• On average, patients wait just under six months for transplant

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9.1 Overview Over the last two years (between 1 April 2011 and 31 March 2013), the number of intestinal transplants fell with 22 transplants carried out in 2011-2012 compared to 14 in 2012-2013. During 2012-2013, there were 15 patients registered for an intestinal transplant. As at 31 March 2013, 5 (33%) patients remained active/suspended, 7 (47%) had received transplant and 3 (20%) died on the transplant list. 9.2 Transplant list In 2012-2013, there were 15 registrations for an intestinal transplant. The outcome of these registrations for paediatric and adult patients, as at 31 March 2013, broken down by transplant centre can be found in Table 9.1.

Table 9.1 Outcome of intestinal registrations in the UK, 1 April 2012 and 13 March 2013 Transplant Outcome of registrations as at 31 March 2013 centre Transplanted Died Removed Active/Susp TOTAL

N % N % N % N % Adult

Cambridge 3 43 1 14 0 0 3 43 7 Oxford 4 67 0 0 0 0 2 33 6

TOTAL 7 54 1 8 0 0 5 38 13 Paediatric

Birmingham 0 0 2 100 0 0 0 0 2

TOTAL 0 0 2 100 0 0 0 0 2

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Table 9.2 shows median waiting time to intestinal transplant by registration type. On average, patients wait 169 days for a transplant.

Table 9.2 Median waiting time to intestinal transplant in the UK, for patients registered 1 April 2009 - 31 March 2012 Registration type Number of patients Waiting time (days)

registered Median 95% Confidence interval Bowel only1 30 171 105 – 237 Liver, bowel and pancreas1 30 168 109 – 227 Bowel and pancreas1 20 59 0 – 323 TOTAL 80 169 126 – 212 1 May also include any of; stomach, spleen, abdominal wall, kidney

9.3 Transplants Table 9.3 shows intestinal transplant activity by transplant centre and transplant type for financial years 2011-2012 and 2012-2013. In 2012-2013, there were a total of 15 transplants, 11 adult and 4 paediatric transplants.

Table 9.3 Intestinal failure transplants in the UK, 1 April 2012 - 31 March 2013 (2011-2012), by age group, centre and type Transplant Transplant type centre LO BO LBP MV MMV TOTAL Adult

Cambridge 0 (0) 0 (1) 1 (1) 4 (6) 1 (1) 6 (9) Oxford 0 (0) 5 (5) 0 (0) 0 (0) 0 (0) 5 (5)

TOTAL 0 (0) 5 (6) 1 (1) 4 (6) 1 (1) 11 (14) Paediatric

Birmingham 0 (0) 1 (4) 1 (2) 0 (0) 0 (0) 2 (6) King's College 0 (0) 1 (2) 1 (0) 0 (0) 0 (0) 2 (2)

TOTAL 0 (0) 2 (6) 2 (2) 0 (0) 0 (0) 4 (8) LO = Liver only - liver or part thereof BO = Bowel only (with or without large bowel) LBP = Liver, bowel and pancreas - liver or part thereof, small bowel (with or without large bowel), pancreas MV = Multivisceral - liver or part thereof, small bowel (with or without large bowel), pancreas, stomach and/or spleen and/or abdominal wall and/or kidney MMV = Modified multivisceral - small bowel (with or without large bowel), pancreas, stomach and/or spleen and/or abdominal wall and/or kidney

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10 Cornea Activity

Cornea Activity Key messages

• 5,978 corneas were supplied to the Corneal Transplant Service (CTS) eye banks, representing a 10% increase over last year

• The number of transplants remained stable at 3,615, meeting demand

• Corneas were retrieved from 31% of organ donors after brain death and 32% of

organ donors after circulatory death

• 36% of cornea only donors were 80 years of age or over

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10.1 Overview The number of corneas donated in 2012-2013 was 6,390, representing an increase of 9% on last year, as shown in Figure 10.1. Additionally, 370 sclera were issued and used. The increase is mainly due to the Eye Retrieval Scheme (ERS) but also due to the fact that more corneas are being donated from organ donors. The ERS consists of 10 teams embedded in the selected trust/boards across the UK, that are funded by NHSBT for the purpose of promoting, procuring and retrieving ocular tissue for clinical use. It should be noted that not all cornea donors and transplants in the UK are reported to the UK Transplant Registry and thus the data reported are not the full national data.

37573598

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Cornea programme in the UK, 1 April 2003 - 31 March 2013 Number of corneas donated and corneas grafted

Figure 10.1

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In 2012-2013 there were 3,217 tissue donors, of whom 2,840 donated corneas and 377 donated corneas and solid organs: see Table 10.1. Compared to 2011-2012, the number of cornea only donors increased by 9%, and the number of cornea and solid organ donors increased by 5%. In 2012-2013, corneas were retrieved from 31% of organ donors after brain death compared with 34% in 2011-2012. Of the 507 organ donors after circulatory death in 2012-2013, 160 (32%) also donated corneas (the same rate as in 2011-2012). Table 10.1 also shows the number and rate per million population (pmp) of donors in 2012-2013 by country and former English Strategic Health Authority (SHA), with figures for 2011-2012 in parentheses. No adjustments have been made for potential demographic differences in populations. England had the highest cornea donor rate in the UK in 2012-2013 (53.9 pmp). In 2012-2013, the cornea donor rate increased in England and Scotland but fell in Wales and Northern Ireland. Across the SHAs the cornea donor rate varied markedly from 16.5 pmp to 117.6 pmp, reflecting locations of the Eye Retrieval Scheme Trusts.

Table 10.1 Cornea donor rates per million population, pmp, in the UK, 1 April 2012 - 31 March 2013 (2011 - 2012), by country and English Strategic Health Authority Country of residence/ Strategic Health Authority

Cornea only Solid organ andcornea

TOTAL TOTAL pmp

North East 224 (191) 19 (22) 243 (213) 93.5 (81.9) North West 799 (681) 31 (25) 830 (706) 117.6 (100) Yorkshire and The Humber 91 (78) 24 (18) 115 (96) 21.7 (18.1) North of England 1114 (950) 74 (65) 1188 (1015) 79.5 (67.9)

East Midlands 213 (214) 18 (18) 231 (232) 50.9 (51.1) West Midlands 72 (53) 35 (26) 107 (79) 19.1 (14.1) East of England 178 (151) 45 (36) 223 (187) 38.1 (31.9) Midlands and East 463 (418) 98 (80) 561 (498) 35.0 (31.1)

London 125 (155) 56 (60) 181 (215) 22.1 (26.2)

South East Coast 55 (84) 19 (22) 74 (106) 16.5 (23.7) South Central 281 (277) 30 (30) 311 (307) 74.4 (73.4) South West 502 (438) 46 (37) 548 (475) 103.4 (89.6) South of England 838 (799) 95 (89) 933 (888) 66.8 (63.6)

England 2540 (2322) 323 (294) 2863 (2616) 53.9 (49.3) Isle of Man 0 (0) 0 (0) 0 (0) 0.0 (0.0) Channel Islands 0 (0) 0 (0) 0 (0) 0.0 (0.0)

Wales 93 (113) 21 (28) 114 (141) 37.3 (46.1)

Scotland 160 (137) 23 (21) 183 (158) 34.9 (30.1)

Northern Ireland 43 (44) 9 (16) 52 (60) 28.7 (33.1)

TOTAL1 2840 (2617) 377 (360) 3217 (2977) 50.7 (46.9) 1 Includes UK recipients where the postcode was unspecified and non-UK recipients

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10.2 Donor and tissue supply In 2012-2013, 93.6% (92.8% in 2011-2012) of retrieved corneas reported to the UK Transplant Registry were supplied to the Corneal Transplant Service (CTS) Eye Banks in Bristol and Manchester. Table 10.2 shows the number of corneas supplied to, and taken from, the CTS Eye Banks for those centres that supplied more than 25 corneas in 2012-2013. The difference between the number supplied and number taken is also shown, together with the number of corneas that were deemed suitable for a penetrating keratoplasty (PK). Corneas that are not suitable for PK may be suitable for other types of corneal transplant. Centres with a negative balance have taken more corneas than they supplied to the CTS Eye Banks. Of the 5,978 corneas supplied to the CTS Eye Banks, 3,610 (60%) were suitable for a PK. This was a decrease compared with 2011-2012, when 63% of corneas supplied to the CTS Eye Banks were suitable for a PK.

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Table 10.2 Corneas supplied to and taken from the CTS Eye Banks, 1 April 2012 - 31 March 2013 Centre Corneas

supplied Suitable for

PK (%) Corneas

taken Balance

ERS Preston 487 245 (50) 11 476 ERS Royal Devon 459 227 (49) 15 444 ERS Merseyside 456 254 (56) 138 318 ERS Newcastle 352 212 (60) 48 304 ERS Nottingham 350 237 (68) 169 181 ERS Southampton 299 159 (53) 48 251 ERS Norfolk 296 198 (67) 30 266 ERS Bolton 265 153 (58) 21 244 ERS Bristol 252 157 (62) 110 142 ERS Glasgow 234 173 (74) 162 72 Manchester, Royal Eye Hospital 205 141 (69) 186 19 Oxford, John Radcliffe Hospital 144 91 (63) 25 119 Middlesbrough, James Cook University Hospital 124 76 (61) 8 116 Belfast, Royal Victoria Hospital 83 56 (67) 40 43 East Grinstead, Queen Victoria Hospital 83 44 (53) 56 27 Blackburn, Royal Infirmary 82 49 (60) 0 82 Barnstaple, North Devon District Hospital 78 47 (60) 2 76 Cardiff, University of Wales Hospital 70 47 (67) 19 51 Newport, Royal Gwent Hospital 60 36 (60) 6 54 Leicester, Royal Infirmary 58 30 (52) 82 -24 Yeovil District Hospital 48 24 (50) 0 48 Portsmouth, Queen Alexandra Hospital 44 26 (59) 21 23 Plymouth, Royal Eye Infirmary 42 27 (64) 34 8 Stoke, North Staffordshire Royal Infirmary 42 32 (76) 18 24 Cambridge, Addenbrookes Hospital 40 24 (60) 51 -11 Dundee, Ninewells Hospital 38 33 (87) 4 34 Dorset, County Hospital 36 17 (47) 0 36 Salisbury, District Hospital 36 16 (44) 0 36 Coventry & Warwickshire Hospital 36 23 (64) 31 5 Taunton, Taunton & Somerset Hospital 34 19 (56) 4 30 Birmingham, Birmingham & Midland Eye Centre 33 24 (73) 86 -53 Reading, Royal Berkshire Hospital 32 21 (66) 42 -10 Edinburgh, Royal Infirmary 30 23 (77) 0 30 Sheffield, Northern General Hospital 28 16 (57) 0 28 Leeds, St James University Hospital 52 39 (75) 125 -73 Aberdeen, Royal Infirmary 26 19 (73) 32 -6

Eye retrieval scheme centres 3450 2015 (58) 752 2698 Centres supplying more than 25 corneas 1584 1000 (63) 872 712 All other centres 944 595 (63) 1798 -854

TOTAL 5978 3610 (60) 3422 2556 PK - Penetrating keratoplasty

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10.3 CTS Eye Bank activity The activity levels for the Bristol and Manchester Eye Banks are shown in Table 10.3. The numbers of corneas received by the CTS Eye Banks increased in 2012-2013 by 10%, and the number of corneas issued increased by 2%. In 2012-2013, 5,978 corneas were received into the CTS Eye Banks, of which 3,651 (61%) were subsequently issued for grafting. The remaining corneas were unsuitable for transplantation.

Table 10.3 Corneas received into the Bristol and Manchester Eye Banks, 1 April 2012 - 31 March 2013 (2011-2012), by year Total received Number issued1 % issued Difference between

number received and issued

Bristol 2472 (2361) 1458 (1514) 59 (64) 1014 (847) Manchester 3506 (3082) 2193 (2061) 63 (67) 1313 (1021)

Total 5978 (5443) 3651 (3575) 61 (66) 2327 (1868) 1 Number issued of those received in each year

The outcome of corneas received into the CTS Eye Banks is given in Table 10.4. Of the corneas supplied to the Eye Banks in 2012-2013, 56% were issued and used and 5% were issued but not used. Of the corneas supplied to the Eye Banks, 11% were unsuitable because of medication contraindications, 18% were unsuitable due to tissue quality and 4% were discarded because of bacterial or fungal contamination. 5% of corneas became outdated, that is, they exceeded 28 days storage. Corneas that were unsuitable for transplantation were, where possible, used for research when permission had been given by the relatives.

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10.4 Transplants Corneal transplant activity by country of residence and former Strategic Health Authority in England for the years 2011-2012 and 2012-2013 is detailed in Table 10.5 for corneas supplied through the CTS Eye Banks and others that have been reported to the UK Transplant Registry by Moorfields Eye Bank. Corneas from the East Grinstead Eye Bank will be reported to the UK Transplant Registry during 2013-2014. No adjustments have been made for potential demographic differences in populations. The overall transplant rate was 56.8 pmp in 2011-2012; this increased to 58.2 pmp in 2012-2013. The transplant rates increased in England, Scotland and Wales, but fell in Northern Ireland. England had the highest transplant rate in the UK: 60.3 pmp, this ranged from 41.4 pmp to 74.7 pmp across the SHAs.

Table 10.4 Outcome of corneas received into the Bristol and Manchester Eye Banks, 1 April 2012 - 31 March 2013 (2011 - 2012), by year Outcome of cornea Bristol Manchester TOTAL

N % N % N %

Total used 1329 (1416) 54 (60) 2037 (1923) 58 (62) 3366 (3339) 56 (61)

Not used Issued, not used 129 (98) 5 (4) 156 (138) 4 (4) 285 (236) 5 (4) Unsuitable – tissue quality 555 (434) 22 (18) 504 (343) 14 (11) 1059 (777) 18 (14) Medical reason – virology1 87 (79) 4 (3) 115 (148) 3 (5) 202 (227) 3 (4) Medical reason – other2 206 (204) 8 (9) 268 (206) 8 (7) 474 (410) 8 (8) Contaminated 96 (120) 4 (5) 167 (151) 5 (5) 263 (271) 4 (5) Other/not reported 57 (10) 2 (<1) 216 (146) 6 (5) 273 (156) 5 (3)

Total not used 1143 (945) 46 (40) 1469 (1159) 42 (38) 2612 (2104) 44 (39)

TOTAL 2472 (2361) 3506 (3082) 5978 (5443) 1 Positive or missing serology tests 2 Other medical contraindications

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Table 10.5 Cornea transplants1 performed per million population (pmp) in the UK, 1 April 2011 - 31 March 2013, by country/Strategic Health Authority

Number of transplants (pmp) Country of residence/ Strategic Health Authority 2011-2012 2012-2013

North East 107 (41.2) 108 (41.5) North West 515 (72.9) 522 (73.9) Yorkshire and The Humber 415 (78.4) 395 (74.7) North of England 1037 (69.4) 1025 (68.6)

East Midlands 257 (56.6) 307 (67.6) West Midlands 322 (57.4) 275 (49.0) East of England 350 (59.7) 337 (57.5) Midlands and East 929 (58.0) 919 (57.4)

London 490 (59.8) 543 (66.2)

South East Coast 254 (56.7) 309 (69.0) South Central 248 (59.3) 173 (41.4) South West 227 (42.8) 234 (44.2) South of England 729 (52.2) 716 (51.3)

England 3185 (60.0) 3203 (60.3) Isle of Man 1 (12.5) 2 (25.0) Channel Islands 4 (25.0) 4 (25.0)

Wales 97 (31.7) 137 (44.8)

Scotland 196 (37.3) 243 (46.3)

Northern Ireland 85 (47.0) 69 (38.1)

TOTAL2 3608 (56.8) 3697 (58.2) 1 Corneas supplied through the CTS Eye Banks, Moorfields Eye Bank and East Grinstead Eye Bank 2 Includes UK recipients where the postcode was unspecified and non-UK recipients

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10.5 Demographic characteristics The age group, sex and ethnicity of cornea donors and transplant recipients are shown in Table 10.6. Of the 2,840 cornea only donors, 36% were aged ≥80 years compared with 34% last year.

Table 10.6 Age of deceased cornea donors and transplant recipients 1 April 2012 - 31 March 2013, in the UK Cornea only donors Solid organ and cornea

donors Transplant recipients

N (%) N (%) N (%)

Age group (years) 0 - 17 12 (0) 2 (1) 89 (2) 18 - 34 41 (1) 29 (8) 561 (15) 35 - 49 135 (5) 79 (21) 508 (14) 50 - 59 222 (8) 101 (27) 389 (11) 60 - 69 580 (20) 98 (26) 626 (17) 70-79 834 (29) 64 (17) 836 (23) 80+ 1016 (36) 3 (1) 688 (19) mean (SD) 73 (14) 56 (14) 59 (21)

Sex Male 1717 (60) 195 (52) 1974 (53) Female 1122 (40) 181 (48) 1723 (47) Not reported 2 1

Ethnicity White 2532 (99) 330 (96) 3126 (85) Asian 12 (0) 2 (1) 337 (9) Black 4 (0) 6 (2) 147 (4) Chinese 2 (0) 3 (1) 9 (0) Other 4 (0) 3 (1) 27 (1) Not reported 286 33 51

TOTAL 2840 (100) 377 (100) 3697 (100)

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11 Survival Rates Following Transplantation

Survival Rates FollowingTransplantation

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This chapter shows graft survival rates over time for kidney, pancreas and cornea transplants, and patient survival estimates for kidney, pancreas, cardiothoracic, liver and intestinal transplants, performed in the UK. Separate estimates are presented for adult and paediatric patients (using organ specific age definitions) and for transplants from donors after brain death and donors after circulatory death. In all cases, the Kaplan-Meier estimate of the survivor function was used to provide the survival rate and groups (years) were compared using the log-rank test. The analyses do not take account of risk factors which may change over time. Graft survival is defined as time from transplant to graft failure, censoring for death with a functioning graft and grafts still functioning at time of analysis. Patient survival is defined as time from transplant to patient death, censoring for patients still alive at time of analysis.

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11.1 Kidney graft and patient survival 11.1.1 Adult kidney recipients - donor after brain death (DBD) Figure 11.1 shows long-term graft survival in adult (≥18 years) recipients for first kidney only transplant from donors after brain death. Table 11.1 shows the graft survival estimates and confidence intervals for one, two, five and ten years post-transplant. There have been significant improvements in one, two and five year survival over the time periods shown, p<0.01 in each case. Table 11.2 shows the patient survival estimates and confidence intervals for one, two, five and ten years post-transplant. There have been significant improvements in one and two year survival over the time periods shown, p<0.03 in each case.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (2864)2002-2004 (2747)2005-2007 (2208)2008-2011 (2875)

% G

raft

surv

ival

Years since transplant

Year of transplant(Number at risk on day 0)

Long-term graft survival after first adult kidney only transplant from donors after brain death,1 January 1999 – 31 December 2011

Figure 11.1

Table 11.1 Graft survival after first adult kidney only transplant from a DBD Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 2864 91 (90-92) 89 (88-90) 82 (81-84) 71 (69-73) 2002-2004 2747 91 (90-92) 89 (88-91) 83 (82-84) 2005-2007 2208 93 (92-94) 91 (90-92) 85 (84-87) 2008-2011 2875 94 (93-94)

Table 11.2 Patient survival after first adult kidney only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 2869 95 (94-96) 93 (92-94) 87 (86-88) 74 (73-76) 2002-2004 2748 96 (95-96) 94 (93-95) 88 (87-89) 2005-2007 2210 97 (96-98) 95 (94-96) 89 (88-91) 2008-2011 2875 96 (96-97)

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11.1.2 Adult kidney recipients - donor after circulatory death (DCD) Long-term graft survival in adult recipients for kidney transplants from donors after circulatory death is shown in Figure 11.2. Table 11.3 shows the graft survival estimates and confidence intervals for one, two, five and ten years post-transplant. There has been a significant improvement in one, two and five year survival over the time periods shown, p<0.001 in each case. One year patient survival is comparable for DBD and DCD donor transplants in the most recent time periods. Table 11.4 shows the patient survival estimates and confidence intervals for each time period analysed. There were no statistically significant changes in patient survival over time (p>0.1).

0

10

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30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (133)2002-2004 (313)2005-2007 (661)2008-2011 (1920)

% G

raft

surv

ival

Years since transplant

Long-term graft survival after first adult kidney only transplant from donors after circulatory death, 1 January 1999 – 31 December 2011

Figure 11.2

Year of transplant(Number at risk on day 0)

Table 11.3 Graft survival after first adult kidney only transplant from a DCD Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 133 82 (75-88) 80 (72-86) 73 (64-80) 59 (49-67) 2002-2004 313 93 (89-95) 93 (89-95) 86 (81-89) 2005-2007 661 93 (91-95) 92 (89-94) 86 (83-89) 2008-2011 1920 92 (90-93)

Table 11.4 Patient survival after first adult kidney only transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 133 91 (85-95) 90 (83-94) 84 (76-89) 68 (59-75) 2002-2004 314 97 (94-98) 95 (92-97) 87 (83-91) 2005-2007 661 95 (93-97) 93 (91-95) 87 (84-89) 2008-2011 1921 95 (94-96)

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11.1.3 Adult kidney recipients - living donor Long-term graft survival in adult recipients for living donor kidney transplants in the UK is shown in Figure 11.3. Table 11.5 shows graft survival estimates and confidence intervals for each time period analysed. There has been a significant improvement in one year graft survival over the time periods shown, p=0.02. Table 11.6 shows the patient survival estimates and confidence intervals for one, two, five and ten years post transplant. There were no statistically significant changes in patient survival over time (p>0.1).

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (747)2002-2004 (1000)2005-2007 (1581)2008-2011 (2981)

% G

raft

surv

ival

Years since transplant

Long-term graft survival after first adult living donor kidney only transplant in the UK, 1 January 1999 – 31 December 2011

Figure 11.3

Year of transplant(Number at risk on day 0)

Table 11.5 Graft survival after first adult living donor kidney transplant Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 747 95 (93-96) 94 (92-95) 88 (86-91) 78 (74-81) 2002-2004 1000 95 (93-96) 94 (92-95) 90 (88-92) 2005-2007 1581 96 (95-97) 95 (94-96) 91 (90-93) 2008-2011 2981 97 (96-97)

Table 11.6 Patient survival after first adult living donor kidney transplant Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 748 98 (97-99) 97 (96-98) 95 (93-96) 90 (87-92) 2002-2004 1000 98 (97-99) 98 (96-98) 95 (94-97) 2005-2007 1580 99 (98-99) 98 (97-99) 96 (94-97) 2008-2011 2981 99 (98-99)

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11.1.4 Paediatric kidney recipients - donor after brain death (DBD) Figure 11.4 shows long-term graft survival in paediatric (<18 years) recipients for first kidney only transplants from donors after brain death. Graft survival estimates and confidence intervals are shown for each time period analysed in Table 11.7. There has been a significant improvement in one year survival over the time periods shown, p=0.01. Table 11.8 shows the patient survival estimates and confidence intervals for one, two, five and ten years post-transplant. There were no statistically significant changes in patient survival over time (p>0.1).

0

10

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30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (248)2002-2004 (200)2005-2007 (187)2008-2011 (245)

% G

raft

surv

ival

Years since transplant

Long-term graft survival after first paediatric kidney only transplant from donors after brain death, 1 January 1999 – 31 December 2011

Figure 11.4

Year of transplant(Number at risk on day 0)

Table 11.7 Graft survival after first paediatric kidney only transplant from a DBD Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 248 88 (84-92) 85 (80-89) 78 (72-83) 66 (59-71) 2002-2004 200 93 (88-95) 91 (86-94) 80 (74-85) 2005-2007 187 92 (88-95) 90 (85-94) 85 (79-90) 2008-2011 245 96 (93-98)

Table 11.8 Patient survival after first paediatric kidney only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 248 99 (97-100) 99 (97-100) 98 (95-99) 96 (93-98) 2002-2004 201 100 (-) 100 (-) 98 (95-99) 2005-2007 188 99 (96-100) 99 (96-100) 99 (96-100) 2008-2011 245 100 (97-100)

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11.1.5 Paediatric kidney recipients - living donor Long-term graft survival in paediatric recipients for living donor kidney transplants in the UK is shown in Figure 11.5. Table 11.9 shows graft survival estimates and confidence intervals for each time period analysed. There has been a significant improvement in two and five year survival over the time periods shown, p<0.03. Table 11.10 shows the patient survival estimates and confidence intervals for one, two, five and ten years post-transplant. There were no statistically significant differences in patient survival over time (p>0.05). There were insufficient paediatric recipients of first kidney only transplants from donors after circulatory death to permit reliable analysis.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (85)2002-2004 (119)2005-2007 (139)2008-2011 (239)

% G

raft

surv

ival

Years since transplant

Long-term graft survival after first paediatric living donor kidney only transplant in the UK, 1 January 1999 – 31 December 2011

Figure 11.5

Year of transplant(Number at risk on day 0)

Table 11.9 Graft survival after first paediatric living donor kidney transplant Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 85 93 (85-97) 90 (82-95) 83 (73-90) 71 (60-80) 2002-2004 119 97 (92-99) 96 (91-99) 92 (84-96) 2005-2007 139 98 (93-99) 98 (93-99) 95 (89-97) 2008-2011 239 95 (91-97)

Table 11.10 Patient survival after first paediatric living donor kidney transplant Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 86 98 (91-99) 96 (89-99) 95 (88-98) 93 (84-97) 2002-2004 119 97 (92-99) 97 (92-99) 96 (91-99) 2004-2006 139 100 (-) 100 (-) 100 (-) 2008-2011 239 99 (96-100)

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11.2 Pancreas graft and patient survival 11.2.1 Simultaneous kidney/pancreas transplants - donor after brain death (DBD) National pancreas follow-up data are only available for transplants performed since 1 January 2001. There are insufficient data available to analyse long-term survival. Figure 11.6 shows pancreas graft survival in recipients receiving their first simultaneous kidney/pancreas (SPK) transplant performed from donors after brain death, 2002 - 2004, 2005 - 2007 and 2008 - 2011. Graft and patient survival estimates and confidence intervals are shown at one year, two years and five years in Table 11.11 and Table 11.12 respectively. Results relate to adults only as there are no paediatric pancreas transplant recipients.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5

2002-2004 (153)2005-2007 (390)2008-2011 (498)

Pancreas graft survival after first SPK transplant from donors after brain death,1 January 2002 – 31 December 2011

% G

raft

surv

ival

Years since transplant

Figure 11.6

Year of transplant(Number at risk on day 0)

Table 11.11 Graft survival after first SPK transplant from a DBD Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year

2002-2004 153 78 (71-84) 76 (68-82) 69 (61-76) 2005-2007 390 88 (84-91) 86 (82-89) 77 (72-81) 2008-2011 498 84 (81-87)

Table 11.12 Patient survival after first SPK transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year

2002-2004 153 91 (85-95) 90 (83-94) 83 (76-88) 2005-2007 393 95 (93-97) 94 (91-96) 90 (86-92) 2008-2011 500 96 (94-98)

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11.2.2 Simultaneous kidney/pancreas transplants - donor after circulatory death (DCD) The majority of simultaneous kidney/pancreas (SPK) transplants from a DCD have been performed since 1 January 2007, so there are insufficient data available to analyse long-term survival. Figure 11.7 shows pancreas graft survival in recipients receiving their first SPK transplant performed from donors after circulatory death, 2008 - 2011. Graft and patient survival estimates and confidence intervals are shown at one year in Table 11.13 and Table 11.14 respectively. Results are for adult patients only.

0

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60

70

80

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100

0 1

1999-2001 (0)

Pancreas graft survival after first SPK transplant from donors after circulatory death,1 January 2008 – 31 December 2011

% G

raft

surv

ival

Years since transplant

Figure 11.7

Year of transplant(Number at risk on day 0)

2008-2011 (88)

Table 11.13 Graft survival after first SPK transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year

2008-2011 88 90 (81-95)

Table 11.14 Patient survival after first SPK transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year

2008-2011 89 98 (91-99)

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11.2.3 Pancreas only transplants - donor after brain death (DBD) Figure 11.8 shows pancreas graft survival in recipients receiving their first pancreas only transplant performed from donors after brain death, 2002 - 2004, 2005 - 2007 and 2008 - 2011. Graft and patient survival estimates and confidence intervals are shown at one year, two years and five years in Table 11.15 and Table 11.16 respectively. Results are for adult patients only.

0

10

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30

40

50

60

70

80

90

100

0 1 2 3 4 5

2002-2004 (26)2005-2007 (59)2008-2011 (86)

Pancreas graft survival after pancreas only transplant from donors after brain death, 1 January 2002 – 31 December 2011

% G

raft

surv

ival

Years since transplant

Figure 11.8

Year of transplant(Number at risk on day 0)

Table 11.15 Graft survival after first pancreas only transplant from a DBD Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year

2002-2004 26 58 (37-74) 46 (27-64) 33 (16-51) 2005-2007 59 71 (57-81) 55 (42-67) 45 (32-57) 2008-2011 86 68 (57-77)

Table 11.16 Patient survival after first pancreas only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year

2002-2004 26 100 (-) 100 (-) 77 (50-91) 2005-2007 60 97 (87-99) 95 (84-98) 92 (81-97) 2008-2011 90 94 (85-97)

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11.2.4 Pancreas only transplants - donor after circulatory death (DCD) Figure 11.9 shows pancreas graft survival in recipients receiving their first pancreas only transplant performed from donors after circulatory death, 2008 - 2011. Graft and patient survival estimates and confidence intervals are shown at one year in Table 11.17 and Table 11.18 respectively. Results are for adult patients only.

0

10

20

30

40

50

60

70

80

90

100

0 1

1999-2001 (0)

Pancreas graft survival after pancreas only transplant from donors after circulatory death, 1 January 2008 – 31 December 2011

% G

raft

surv

ival

Years since transplant

Figure 11.9

Year of transplant(Number at risk on day 0)

2008-2011 (42)

Table 11.17 Graft survival after first pancreas only transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year

2008-2011 42 69 (53-81)

Table 11.18 Patient survival after first pancreas only transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year

2008-2011 43 98 (84-100)

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11.3 Cardiothoracic patient survival 11.3.1 Adult heart recipients Long-term patient survival for adult (≥16 years) recipients after first heart only transplants is shown in Figure 11.10. Domino and deceased donor (DBD only) transplants are included as well as urgent patients. Table 11.19 shows the patient survival estimates and confidence intervals for one, two, five and ten years post-transplant. There were no statistically significant changes in survival rates over the time periods analysed (p>0.1).

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (501)2002-2004 (387)2005-2007 (338)2008-2011 (374)

Long-term patient survival after first adult heart only transplant in the UK, 1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.10

Year of transplant(Number at risk on day 0)

Table 11.19 Patient survival after first adult heart only transplant Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 501 80 (76-83) 77 (73-80) 69 (65-73) 54 (50-58) 2002-2004 387 80 (76-84) 78 (74-82) 70 (65-74) 2005-2007 338 83 (79-87) 81 (76-85) 76 (71-80) 2008-2011 374 81 (77-85)

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11.3.2 Adult heart/lung block recipients Patient survival for adult recipients after first heart/lung block transplants is shown in Figure 11.11. Patient survival estimates and confidence intervals for each time period analysed are shown in Table 11.20. There were no statistically significant differences in patient survival over time (p>0.2).

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (102)2002-2004 (37)2005-2007 (17)2008-2011 (15)

Long-term patient survival after first adult heart/lung block transplant in the UK, 1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.11

Year of transplant(Number at risk on day 0)

Table 11.20 Patient survival after first adult heart/lung block transplant Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 102 66 (56-74) 62 (52-70) 51 (41-60) 37 (27-46) 2002-2004 37 68 (50-80) 68 (50-80) 56 (39-71) 2005-2007 17 82 (55-94) 76 (49-90) 76 (49-90) 2008-2011 15 87 (56-96)

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11.3.3 Adult lung recipients – donors after brain death (DBD) Patient survival for adult recipients after first lung only transplant from donors after brain death is shown in Figure 11.12, with survival estimates and confidence intervals shown in Table 11.21. There were no statistically significant differences in patient survival over time (p>0.08).

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (275)2002-2004 (348)2005-2007 (340)2008-2011 (531)

Long-term patient survival after first adult lung only transplant from donors after brain death,1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Figure 11.12

Years since transplant

Year of transplant(Number at risk on day 0)

Table 11.21 Patient survival after first adult lung only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 275 80 (75-84) 70 (64-75) 52 (46-58) 32 (27-38) 2002-2004 348 76 (71-80) 68 (62-72) 56 (51-61) 2005-2007 340 78 (73-82) 70 (65-75) 51 (46-57) 2008-2011 531 82 (79-85)

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11.3.4 Adult lung recipients – donors after circulatory death (DCD) The majority of lung transplants from a DCD have been performed since 1 January 2007, so there are insufficient data available to analyse long-term patient survival. Patient survival for adult recipients after first lung only transplant from donors after circulatory death is shown in Figure 11.13, with survival estimates and confidence intervals shown in Table 11.22.

0

10

20

30

40

50

60

70

80

90

100

0 1

1999-2001 (275)

Patient survival after first adult lung only transplant from donors after circulatory death,1 January 2008 – 31 December 2011

% P

atie

nt s

urvi

val

Figure 11.13

Years since transplant

Year of transplant(Number at risk on day 0)

2008-2011 (62)

Table 11.22 Patient survival after first adult lung only transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year

2008-2011 62 84 (72-91)

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11.3.5 Paediatric heart recipients Long-term patient survival for paediatric recipients after first heart only transplant is shown in Figure 11.14. Domino and deceased donor transplants (DBD donors only) are included as well as transplants for urgent patients. Table 11.23 shows the patient survival estimates and confidence intervals for one, two, five and ten years post-transplant. There have been significant improvements in two year survival over the time periods shown, p<0.02. The number of paediatric lung and heart/lung transplant recipients was too small for analysis.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (77)2002-2004 (76)2005-2007 (83)2008-2011 (133)

Long-term patient survival after first paediatric heart only transplant in the UK, 1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.14

Year of transplant(Number at risk on day 0)

Table 11.23 Patient survival after first paediatric heart only transplant Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 77 91 (82-95) 83 (72-90) 76 (64-84) 63 (50-73) 2002-2004 76 93 (85-97) 92 (83-96) 85 (75-92) 2005-2007 83 98 (91-99) 96 (89-99) 90 (82-95) 2008-2011 133 90 (84-94)

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11.4 Liver patient survival 11.4.1 Adult recipients - donor after brain death (DBD) Long-term patient survival for adult (≥17 years) recipients after first elective liver only transplants from donors after brain death is shown in Figure 11.15. Table 11.24 shows patient survival estimates at one, two, five and ten years post-transplant. There have been significant improvements in one, two and five year patient survival over the time periods analysed, p<0.001, p<0.04 and p<0.03, respectively.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (1216)2002-2004 (1239)2005-2007 (1059)2008-2011 (1543)

Long-term patient survival after first elective adult liver only transplant from donors after brain death, 1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.15

Year of transplant(Number at risk on day 0)

Table 11.24 Patient survival after first elective adult liver only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 1216 86 (84-88) 83 (81-85) 74 (71-76) 61 (59-64) 2002-2004 1239 89 (87-90) 85 (83-87) 76 (74-79) 2005-2007 1059 90 (88-92) 87 (85-89) 78 (76-81) 2008-2011 1543 93 (91-94)

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11.4.2 Adult recipients - donor after circulatory death (DCD) Patient survival for adult (≥17 years) recipients after first elective liver only transplants from donors after circulatory death is shown in Figure 11.16. The majority of these liver transplants have been performed since 1 January 2002, so it is not possible to estimate long term patient survival. Table 11.25 shows patient survival estimates at one, two and three years post transplant.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3

1999-2001 (94)2002-2004 (366)

Liver patient survival after first elective adult liver only transplant from donors after circulatory death, 1 January 2005 – 31 December 2010

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.16

2005-2007 (94)2008-2011 (366)

Year of transplant(Number at risk on day 0)

Table 11.25 Patient survival after first elective adult liver only transplant from a DCD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Three year

2005-2007 94 90 (82-95) 87 (78-92) 85 (76-91) 2008-2011 366 86 (82-89)

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11.4.3 Paediatric recipients - donor after brain death (DBD) Figure 11.17 and Table 11.26 show long-term patient survival estimates for first elective liver only transplants from donors after brain death in paediatric (<17 years) recipients. There have been no significant improvements in patient survival over the time period analysed (p>0.05). The number of paediatric transplants from donors after circulatory death was too small to estimate patient survival.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10

1999-2001 (173)2002-2004 (170)2005-2007 (146)2008-2011 (195)

Long-term patient survival after first elective paediatric liver only transplant from donors after brain death, 1 January 1999 – 31 December 2011

% P

atie

nt s

urvi

val

Years since transplant

Figure 11.17

Year of transplant(Number at risk on day 0)

Table 11.26 Patient survival after first elective paediatric liver only transplant from a DBD Year of No. at risk % Patient survival (95% confidence interval) transplant on day 0 One year Two year Five year Ten year

1999-2001 173 91 (85-94) 87 (81-91) 86 (80-90) 83 (76-88) 2002-2004 170 92 (87-95) 90 (84-94) 86 (79-90) 2005-2007 146 92 (86-95) 91 (85-95) 88 (82-92) 2008-2011 195 94 (90-97)

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11.5 Intestinal patient survival The majority of intestinal transplants have been performed since 1 January 2006, so there are insufficient data available to analyse long-term patient survival. Figure 11.18 and Table 11.27 show one-year patient survival estimates for recipients receiving their first intestinal transplant, 2007 – 2011, by recipient age group.

0

10

20

30

40

50

60

70

80

90

100

0 1

Adult (36)Paediatric (40)

Patient survival after first intestinal graft in the UK, 1 January 2007 – 31 December 2011

Figure 11.18

Years since transplant

% P

atie

nt s

urvi

val

Recipient age group(Number at risk on day 0)

Table 11.27 Patient survival after first intestinal transplant in the UK, 1 January 2007 - 31 December 2011 Recipient No. at risk % Patient survival (95% confidence interval) age group on day 0 One year

Adult 36 82 (65-92) Paediatric 40 87 (72-94)

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11.6 Cornea graft survival Good quality cornea follow-up data were only available for transplants performed since 1 April 1999. There are insufficient data available to analyse long-term survival effects. Figure 11.19 shows graft survival estimates for first penetrating keratoplasty (PK) for grafts 2002 - 2004, 2005 - 2007 and 2008 - 2011. Graft survival estimates and confidence intervals are shown by transplant year at one, two and five years in Table 11.28.

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5

2002-2004 (3723)2005-2007 (3228)2008-2011 (3038)

Cornea graft survival after first PKP graft in the UK, 1 January 2002 – 31 December 2011

Figure 11.19

Years since transplant

% G

raft

surv

ival

Year of transplant(Number at risk on day 0)

Table 11.28 Cornea graft survival after first PK in the UK Year of No. at risk % Graft survival (95% confidence interval) transplant on day 0 One year Two year Five year

2002-2004 3723 93 (92-94) 86 (85-87) 74 (72-76) 2005-2007 3228 93 (92-94) 87 (86-88) 73 (71-74) 2008-2011 3038 91 (90-92)

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12 NHS Organ Donor Register

NHS Organ DonorRegister

Key messages

• 19.5 million people on the ODR at March 2013 (31% of UK population) • 38% of 1,212 deceased organ donors last year were on the ODR • 58% of 1,011,929 registrations last year were through the Driver and Vehicle

Licensing Agency (DVLA)

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By the end of March 2013 the NHS Organ Donor Register (ODR) held just over 19.5 million registrations with 1,011,929 registrations made last year. A summary of the number of registrations at the end of each financial year from 31 March 2004 to 31 March 2013 is shown in Figure 12.1. During the year, data on the register were continually reviewed and validated with people known to have died, withdrawn from the list and duplicate registrations resolved. In particular, 38,000 Scottish registrations were removed in 2012 as they were identified as duplicates. Of the 1,212 deceased organ donors in 2012-2013, 38% were registered on the ODR compared with 37% of organ donors in 2011-2012. Similarly, 40% of cornea-only donors in 2012-2013 were registered on the ODR, compared with 41% in 2011-2012.

11.212.2

13.114.2

15.116.1

17.117.8

18.719.5

0.0

5.0

10.0

15.0

20.0

25.0

2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013Year

Num

ber o

n th

e O

DR

(mill

ions

)

Number on the NHS Organ Donor Register at 31 MarchFigure 12.1

Those registered on the ODR come from all parts of the UK. Table 12.1 shows the percentage of the population registered in each country/ former Strategic Health Authority at 31 March 2013, and the number of registrants. This information is also illustrated in Figure 12.2. No adjustment has been made for any differences in demographics of the populations.

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Table 12.1 Registrants on the NHS Organ Donor Register at 31 March 2013, by Country/ Strategic Health Authority Registrants Country/ Strategic Health Authority N pmp

Proportion of population registered

North East 755,921 290,739 29% North West 1,984,553 281,098 28% Yorkshire and The Humber 1,531,130 289,439 29% North of England 4,271,604 285,726 29%

East Midlands 1,312,714 289,144 29% West Midlands 1,409,906 251,320 25% East of England 1,866,425 318,503 32% Midlands and East 4,589,045 286,636 29%

London 2,038,210 248,562 25%

South East Coast 1,528,416 341,164 34% South Central 1,406,750 336,543 34% South West 1,944,205 366,831 37% South of England 4,879,371 349,525 35%

England 15,778,230 297,086 30% Isle of Man 11,115 138,938 14% Channel Islands 14,347 89,669 9%

Wales 968,751 316,585 32%

Scotland 2,146,307 408,820 41%

Northern Ireland 548,291 302,923 30%

TOTAL1 19,532,806 307,749 31% 1 Includes 65,765 registrants where the postcode was unknown

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There are a number of registration routes: Health Department registration leaflets readily available in the community; campaigns in both national and regional newspapers and by community groups; the European Health Insurance Card; when registering as a patient with a General Practitioner (via the Family Health Services Authorities); with driving licence applications and reminders (via the Driver and Vehicle Licensing Agency (DVLA)); from the Passport Agency when applying for a new passport; when applying for a Boots Advantage Card; online registrations via the Organ Donation and Transplantation (ODT) website (www.organdonation.nhs.uk) and by telephone. The source of applications for registration on the ODR is illustrated in Figure 12.3. This figure shows that 21% of registrations in 2012-2013 arrived by means of registering through a GP, 58% from driving licence applications and reminders through the DVLA and 8% online through the ODT website.

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GP registration21%Boots

6%

Registration leaflet1%

Online8%

DVLA57%

Other7%

GP registration21%

Boots6%

Registration leaflet1%

Online8%

DVLA58%

Other6%

Source of applications for registration on the NHS Organ Donor Register,1 April 2011 - 31 March 2013

2011-2012 2012-2013

Figure 12.3

At the end of March 2013, 88% of registrants, where the information was available, indicated a willingness to donate all organs and tissue (kidneys, pancreas, heart, lungs, liver and corneas). However, of those who were not willing to donate all organs, the majority (88%) did not wish to donate their corneas. Of the restricted registrations, only 7% (less than 1% of the total register) did not wish to donate their kidneys. Willingness to donate, by organ type, is shown in Table 12.2.

Table 12.2 Preparedness of those registered on the NHS Organ Donor Register at 31 March 2013 to donate different organs1 Registrants prepared to donate all organs 88% Of those not prepared to donate all organs ('restricted donors'): Not prepared to donate: % of 'Restricted donors' % of all registrants

Kidney 7 0.8 Pancreas 24 2.8 Heart 24 2.8 Lungs 22 2.6 Liver 13 1.6 Corneas 88 10.4 1 This information was not available for approximately 7% of the total register

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People of all ages are eligible for organ donor registration: the distribution of age by sex at time of registration is shown in Figure 12.4. The highest proportion of registrations (22% of males and 24% of females) are in the 21-30 years age group. The lowest proportions are in the under 11 and 11-15 age groups. Of all people registered on the NHS Organ Donor Register, 48% are male and 52% are female.

2.4%1.4%

19.0%

21.6%

19.2%

14.5%

10.0%8.5%

3.6%

1.9% 1.7%

20.7%

23.6%

18.7%

14.0%

9.7%

6.6%

2.8%

0%

5%

10%

15%

20%

25%

30%

<11 11-15 16-20 21-30 31-40 41-50 51-60 61-70 71+Age group (years)

MaleFemale

Figure 12.4 Age and gender of people registered on the NHS Organ Donor Register by 31 March 2013

Per

cent

age

of p

eopl

e re

gist

ered

The breakdown of registrants on the ODR during 2012-2013 by socio-economic group (using the ACORN1 classification, based on postcode) is shown in Figure 12.5, where it is compared with the general UK population. Though having basically similar distributions, there were proportionately more 'wealthy achievers' and less 'hard pressed' on the ODR than in the general population.

wealthy achiever29% urban prosperity

17%

comfortably off25%hard-pressed

18%

moderate means11%

comfortably off27%

wealthy achiever29%

moderate means12%

hard-pressed16%

urban prosperity16%

Registrants on the NHS Organ Donor Register, 1 April 2012 - 31 March 2013,and the general population, by socio-economic group

ODR registrants UK population

Figure 12.5

1 ACORN data supplied by CACI Ltd.

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13 National Potential Donor Audit

National PotentialDonor Audit

Key messages

• There were 28,966 audited deaths reported through the Potential Donor Audit in the financial year to 31 March 2013, including 1,125 (93%) of the 1,212 deceased organ donors

• The neurological death testing rate has increased since last year from 74% to

78% and improvements have been observed in the overall referral rate of potential donors (from 60% to 68%), the rate of approach to donor families (from 66% to 68%) and the proportion of approaches involving a Specialist Nurse – Organ Donation (from 63% to 71%)

• An increase in the overall consent/ authorisation rate has been observed since

last year (from 55% to 57%), partly due to an increase in the consent/ authorisation rate for patients from ethnic minority groups (from 24% to 33%). However, a significant difference in the consent/ authorisation rates for white patients and patients from ethnic minority groups is still apparent (61% and 33%, respectively)

• The consent/ authorisation rate is 88% when a patient’s wish is known at the

time of potential donation, but 105 families overruled their loved one’s known wish to be an organ donor

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13.1 Introduction

In this chapter, summary data from the national Potential Donor Audit (PDA) are shown for 1 April 2012 to 31 March 2013 and data from the previous two financial years are also provided for comparison purposes. The data comprise all audited patient deaths in UK Intensive Care Units (ICUs) and emergency departments, excluding cardiothoracic ICUs and patients aged 76 years and over, in the time period. The data are based on information received by 6 June 2013. The number of solid organ donors reported in this chapter will differ from that shown in the rest of the report, due to the national PDA excluding specific patients.

13.2 Definitions

All data shown in this chapter use the following definitions.

Eligible donors after brain death (DBD) are defined as patients for whom death was confirmed following neurological tests and who had no absolute medical contraindications to solid organ donation.

Eligible donors after circulatory death (DCD) are defined as patients who had treatment withdrawn and death was anticipated within four hours, with no absolute medical contraindications to solid organ donation.

Absolute medical contraindications are currently defined as known HIV positive, known or suspected CJD, active untreated tuberculosis, any malignancy within the past 12 months (excluding brain tumour) and multi-organ failure.

Imminent death anticipated patients who are not confirmed dead using neurological criteria, receiving assisted ventilation, a clinical decision to withdraw treatment has been made and death is anticipated within four hours.

The referral rate is the percentage of patients for whom neurological death was suspected, or imminent death was anticipated, that were discussed with the Specialist Nurse - Organ Donation (SN-OD).

The approach rate is the percentage of eligible donor families approached for consent to/authorisation for donation.

The proportion of approaches involving a SN-OD is the percentage of eligible donor families approached where a SN-OD was involved.

The consent/authorisation rate is the percentage of eligible donor families approached about donation that consented to/ authorised donation. 13.3 Breakdown of audited deaths in ICUs and emergency departments

In the 12-month period there were a total of 28,966 audited patient deaths in the UK. Figures 13.1 and 13.2 show a detailed breakdown from the number of audited patient deaths to the number of solid organ donors for potential DBD and DCD, respectively. In total, 4534 patients meeting the PDA criteria died in circumstances that would enable donation.

Table 13.1 shows the key percentages calculated from the flow chart information. Consent/ authorisation rates have also been provided for cases where the SN-OD was/was not involved in the approach to the family and/or whether the patient's wish to be a donor was known at the time of potential donation. Figure 13.3 uses the flow chart information to illustrate the stages where opportunities are lost pre-donation.

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No Yes No Yes13,531 15,435 13,531 15,435

No Yes No Yes13,804 1,631 14,192 1,243

No Yes No Yes363 1,268 7,232 6,960

No Yes No Yes25 1,243 443 6,517

No Yes No Yes1,188 55 3,114 3,403

No Yes No Yes88 1,100 1,298 1,816

No Yes No Yes356 744 885 931

No Yes No Yes68 676 482 449

DBD DCD DCD658 18 449

What type of donation happened?

Audited Deaths

Were neurological tests to confirm death performed?

Was death confirmed using neurological criteria?

Were there any absolute medical contraindications to solid organ donation?

Were the family formally approached for consent/authorisation for solid organ

donation?

Was the patient ever on mechanical ventilation?

Were all criteria for neurological testing met?

Was consent/authorisation for solid organ donation given by the family?

Did solid organ donation occur?

Figure 13.1 Donation after brain death

Audited Deaths

Was the patient ever on mechanical ventilation?

Was death confirmed using neurological criteria?

28,966

Was imminent death anticipated?

Was treatment withdrawn?

What type of donation happened?

Figure 13.2 Donation after circulatory death

Were there any absolute medical contraindications to solid organ donation?

Were the family formally approached for consent/authorisation for solid organ

donation?

Was consent/authorisation for solid organ donation given by the family?

Did solid organ donation occur?

28,966

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Table 13.1 Summary of key percentages, 1 April 2012 to 31 March 2013

DBD DCD ALL Neurological death testing rate 77.7% Referral rate 91.5% 62.4% 67.9% Approach rate 92.6% 58.3% 67.8% Proportion of approaches involving a SN-OD 78.9% 66.7% 71.3% Consent/authorisation rate 67.6% 51.3% 57.4% - when SN-OD not involved in approach 52.2% 30.8% 36.7% - when SN-OD involved in approach 71.8% 61.5% 65.8% - when patient on ODR and status known at time of potential donation

95.0% 79.7% 86.2%

- when patient’s wish (by any method) is known at time of potential donation1

95.6% 83.5% 88.4%

- when SN-OD involved in approach and patient known to be on ODR at time of potential donation

95.0% 83.0% 88.2%

1 105 families overruled their loved one's known wish to be an organ donor

% o

f pot

entia

l don

ors

0

10

20

30

40

50

60

70

80

90

100

Potentialdonors1

Neurologicaldeath testsperformed(DBD only)

Neurologicaldeath

confirmed(DBD only)

Contraindications Familyapproach

Consent/authorisation

Donation

Figure 13.3 Stages at which potential organ donors lose the opportunity to become actual donors, Figure 13.3 1 April 2012 to 31 March 2013

1 Potential DCD donor - A patient who had treatment withdrawn and death was anticipated within four hours1 Potential DBD donor - A patient who meets all four criteria for neurological death testing1

DBD, 676 donated (41% of potential donors)DCD, 449 donated (7% of potential donors, 14% of those not contraindicated)

22% 2%4%

7%

32%9%

52%

42%

49%52%

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13.4 Eligible donors The number of eligible donors (as defined earlier) and rates per million population (pmp) are shown in Table 13.2, by country and former English Strategic Health Authority (SHA). The number of actual donors pmp can be found in Table 3.2 of Chapter 3. Eligible DBD ranged from 10.6 pmp in East Midlands SHA to 30.4 pmp in Northern Ireland. Eligible DCD ranged from 39.5 pmp in South East Coast SHA to 86.5 pmp in North East SHA. Across the countries, the number of eligible donors ranged from 66.0 pmp in Scotland to 79.7 eligible donors pmp in Wales. Overall, there were 1,188 eligible DBD (18.7 pmp) and 3,114 eligible DCD (49.1 pmp) in the UK. Tables 13.3 and 13.4 show more detailed information by country and English SHA for DBD and DCD data, respectively.

Table 13.2 Eligible donor rates per million population (pmp), in the UK, 1 April 2012 to 31 March 2013, by country and English Strategic Health Authority

Eligible DBD Eligible DCD TOTAL Country/ Strategic Health Authority of donation N (pmp) N (pmp) N (pmp) North East 76 (29.2) 225 (86.5) 301 (115.8) North West 102 (14.4) 295 (41.8) 397 (56.2) Yorkshire and the Humber 85 (16.1) 264 (49.9) 349 (66.0) North of England 263 (17.6) 784 (52.4) 1047 (70.0) East Midlands 48 (10.6) 194 (42.7) 242 (53.3) West Midlands 108 (19.3) 319 (56.9) 427 (76.1) East of England 112 (19.1) 320 (54.6) 432 (73.7) Midlands and East 268 (16.7) 833 (52.0) 1101 (68.8) London 248 (30.2) 359 (43.8) 607 (74.0) South East Coast 64 (14.3) 177 (39.5) 241 (53.8) South Central 70 (16.7) 212 (50.7) 282 (67.5) South West 70 (13.2) 264 (49.8) 334 (63.0) South of England 204 (14.6) 653 (46.8) 857 (61.4) England 983 (18.5) 2629 (49.5) 3612 (68.0) Isle of Man 0 (0.0) 1 (12.5) 1 (12.5) Channel Islands 5 (31.3) 10 (62.5) 15 (93.8) Wales 66 (21.6) 178 (58.2) 244 (79.7) Scotland 79 (15.0) 215 (41.0) 294 (56.0) Northern Ireland 55 (30.4) 81 (44.8) 136 (75.1) TOTAL 1188 (18.7) 3114 (49.1) 4302 (67.8)

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Table 13.3 DBD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by country and English Strategic Health Authority

Country/ Strategic Health Authority of donation

Number of patients where neurological death was suspected

Neurological death testing

rate (%)

DBD referral rate (%)

Number of eligible

DBD donors

Number of eligible DBD

donors whose family were approached

DBD approach rate (%)

Percentage of DBD

approaches that involved a SN-OD (%)

DBD consent/ authorisation

rate (%)

North East 86 88.4 97.7 76 76 100.0 75.0 72.4 North West 147 73.5 95.2 102 96 94.1 88.5 72.9 Yorkshire and the Humber 118 77.1 89.0 85 79 92.9 74.7 68.4 North of England 351 78.3 93.7 263 251 95.4 80.1 71.3

East Midlands 82 65.9 81.7 48 42 87.5 78.6 61.9 West Midlands 158 77.2 90.5 108 101 93.5 55.4 67.3 East of England 136 86.0 94.9 112 106 94.6 81.1 71.7 Midlands and East 376 77.9 90.2 268 249 92.9 70.3 68.3

London 332 79.8 96.7 248 219 88.3 91.3 58.4

South East Coast 85 77.6 92.9 64 58 90.6 81.0 65.5 South Central 102 74.5 87.3 70 65 92.9 92.3 73.8 South West 99 77.8 91.9 70 68 97.1 60.3 75.0 South of England 286 76.6 90.6 204 191 93.6 77.5 71.7

England 1345 78.2 92.8 983 910 92.6 79.6 67.5 Isle of Man 2 50.0 50.0 0 0 Channel Islands 8 75.0 87.5 5 5 100.0 0.0 40.0

Wales 87 78.2 85.1 66 63 95.5 68.3 65.1

Scotland 116 72.4 86.2 79 73 92.4 74.0 78.1

Northern Ireland 73 78.1 86.3 55 49 89.1 87.8 61.2

TOTAL 1631 77.7 91.5 1188 1100 92.6 78.9 67.6

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Table 13.4 DCD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by country and English Strategic Health Authority

Country/ Strategic Health Authority of donation

Number of patients for

whom imminent death was anticipated

DCD referral rate (%)

Number of eligible DCD

donors

Number of eligible DCD

donors whose family were approached

DCD approach rate (%)

Percentage of DCD

approaches that involved a SN-OD (%)

DCD consent/ authorisation

rate (%)

North East 390 81.8 225 92 40.9 60.9 60.9 North West 899 70.2 295 179 60.7 79.9 53.1 Yorkshire and the Humber 668 67.4 264 157 59.5 63.1 46.5 North of England 1957 71.5 784 428 54.6 69.6 52.3

East Midlands 467 47.1 194 95 49.0 55.8 44.2 West Midlands 610 58.7 319 183 57.4 54.1 48.1 East of England 471 79.4 320 194 60.6 75.8 54.1 Midlands and East 1548 61.5 833 472 56.7 63.3 49.8

London 761 69.5 359 226 63.0 84.1 51.3

South East Coast 473 55.8 177 102 57.6 86.3 53.9 South Central 394 52.0 212 113 53.3 76.1 49.6 South West 650 60.9 264 191 72.3 40.3 59.7 South of England 1517 57.0 653 406 62.2 61.8 55.4

England 5783 64.8 2629 1532 58.3 67.8 52.2 Isle of Man 4 25.0 1 0 0.0 Channel Islands 20 10.0 10 2 20.0 0.0 0.0

Wales 432 63.2 178 98 55.1 66.3 40.8

Scotland 483 41.2 215 140 65.1 52.9 50.7

Northern Ireland 238 51.7 81 44 54.3 79.5 45.5

TOTAL 6960 62.4 3114 1816 58.3 66.7 51.3

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Tables 13.5 and 13.6 show more detailed information on the key metrics by Organ Donation Services Team (ODST) for DBD and DCD data, respectively. Specialist Nurses for Organ Donation (SN-ODs) work within an ODST, which covers an area of the UK. As seen in Table 13.5, the neurological death testing rate was highest for the Northern team, the DBD referral rate was highest for the Northern team, the DBD approach rate was highest for the Northern team and the proportion of DBD approaches involving a SN-OD was highest for the South Central team. Table 13.6 indicates that for DCD patients, the highest referral rate was for the Northern team, the highest approach rate was for the South West team and the proportion of DCD approaches involving a SN-OD was highest for the London team. No account has been taken of the demographics of the populations within the teams which may impact on the rates presented.

Table 13.5 DBD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by Organ Donation Services Team (ODST)

ODST

Number of patients where neurological death was suspected

Neurological death testing

rate (%)

DBD referral rate

(%)

Number of eligible

DBD donors

Number of eligible DBD

donors whose family were approached

DBD approach rate (%)

Percentage of DBD

approaches that involved a SN-OD (%)

DBD consent/ authorisation

rate (%) Eastern 146 86.3 94.5 121 115 95.0 82.6 72.2 London 260 81.5 96.5 199 175 87.9 91.4 57.1 Midlands 207 74.9 87.9 136 125 91.9 57.6 65.6 North West 162 75.9 93.8 116 110 94.8 89.1 72.7 Northern 88 86.4 97.7 76 76 100.0 75.0 72.4 Northern Ireland 73 78.1 86.3 55 49 89.1 87.8 61.2 Scotland 116 72.4 86.2 79 73 92.4 74.0 78.1 South Central 126 73.8 88.9 85 79 92.9 92.4 78.5 South East 165 75.8 94.5 118 107 90.7 85.0 63.6 South Wales 75 74.7 84.0 54 51 94.4 62.7 64.7 South West 80 76.3 90.0 56 54 96.4 51.9 68.5 Yorkshire 133 75.2 88.7 93 86 92.5 75.6 66.3 TOTAL 1631 77.7 91.5 1188 1100 92.6 78.9 67.6

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Table 13.6 DCD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by Organ Donation Services Team (ODST)

ODST

Number of patients

for whom imminent death was anticipated

DCD referral rate (%)

Number of

eligible DCD

donors

Number of eligible DCD

donors whose

family were approached

DCD approach rate (%)

Percentage of DCD

approaches that

involved a SN-OD (%)

DCD consent/authorisation

rate (%) Eastern 488 79.3 327 197 60.2 75.6 54.3 London 594 71.9 303 189 62.4 85.2 51.9 Midlands 916 53.9 441 246 55.8 52.0 46.7 North West 964 71.0 302 198 65.6 79.3 50.0 Northern 426 81.2 254 101 39.8 58.4 62.4 Northern Ireland 238 51.7 81 44 54.3 79.5 45.5 Scotland 483 41.2 215 140 65.1 52.9 50.7 South Central 513 54.4 268 146 54.5 74.0 50.7 South East 660 55.8 243 141 58.0 83.0 51.8 South Wales 350 59.1 152 77 50.7 68.8 42.9 South West 565 60.7 225 166 73.8 36.7 61.4 Yorkshire 763 63.8 303 171 56.4 64.3 44.4 TOTAL 6960 62.4 3114 1816 58.3 66.7 51.3

Table 13.7 shows key metrics separately for patients meeting the PDA criteria who were referred in an ICU or an emergency department (irrespective of where the patient died), for DBD and DCD, respectively. Note that the total number of patients in this table and the associated rates do not match the other tables throughout this chapter as Table 13.7 is based on the subset of patients who were referred to the ODST. Table 13.8 shows key metrics separately for adult and paediatric patients, for DBD and DCD, respectively. Note that of the 96 paediatric patients for whom neurological death was suspected, tests were not performed on 38 patients, 5 of whom were less than two months post term.

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Table 13.7 DBD and DCD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by unit where patient referred from, for patients who met the PDA criteria and were referred

Eligible donor type

Unit where patient was referred from

Number of patients who

were referred1

Neurological death testing

rate (%)

Number of eligible donors

Number of eligible donors whose family

were approached

Approach rate (%)

Percentage of

approaches involving a SN-OD (%)

Consent/ authorisation

rate (%)

Number of actual

donors2

DBD Critical care 1322 83.3 1029 959 93.2 81.0 67.2 582 Emergency department 171 76.0 125 120 96.0 75.8 82.5 94 TOTAL 1493 82.5 1154 1079 93.5 80.4 68.9 676

DCD Critical care 4036 2143 1524 71.1 69.9 53.7 389 Emergency department 308 243 206 84.8 70.9 54.9 60 TOTAL 4344 2386 1730 72.5 70.1 53.8 449

1 DBD referral criteria: patients where neurological death was suspected; DCD referral criteria: patients for whom imminent death was anticipated 2 Actual donors resulting from eligible DBD donors includes 16 DCD donors referred from critical care and 2 DCD donors referred from emergency departments

Table 13.8 DBD and DCD key metrics from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by age group

Eligible donor type Age group

Number of patients who met referral

criteria1

Neurological death testing

rate (%) Referral rate (%)

Number of eligible donors

Number of eligible donorswhose family

were approached

Approach rate (%)

Percentage of

approaches involving a SN-OD (%)

Consent/ authorisation

rate (%)

Number of actual

donors2

DBD Adult (>=18) 1535 78.8 92.2 1137 1056 92.9 79.6 68.0 652 Paediatric (<18) 96 60.4 80.2 51 44 86.3 61.4 59.1 24 TOTAL 1631 77.7 91.5 1188 1100 92.6 78.9 67.6 676

DCD Adult (>=18) 6664 63.1 2969 1744 58.7 67.4 52.2 436 Paediatric (<18) 296 47.3 145 72 49.7 50.0 29.2 13 TOTAL 6960 62.4 3114 1816 58.3 66.7 51.3 449

1 DBD referral criteria: patients where neurological death was suspected; DCD referral criteria: patients for whom imminent death was anticipated 2 Actual donors resulting from eligible DBD donors includes 18 DCD donors aged 18 years and over

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13.5 Consent/ authorisation rates The overall DBD consent/ authorisation rate was 67.6% and the 95% confidence limits for this percentage are 64.8% - 70.4%. For DCD, the overall rate was 51.3% and the 95% confidence limits are 49.0% - 53.6%. Consent/ authorisation rates by English SHA or country are illustrated in Figure 13.4 and by Organ Donation Services Team in Figure 13.5 for both DBD and DCD. Caution should be applied when interpreting these consent/ authorisation rates as no adjustment has been made for the mix of patients in terms of age, sex and ethnicity. Across the English SHA and countries, the DBD consent/ authorisation rates range from 58.4% in London to 78.1% in Scotland. DCD consent/ authorisation rates range from 40.8% in Wales to 60.9% in the North East.

DBD

Consent/authorisation rates

40 - <45%

45 - <50%

50 - <55%

55 - <60%

60 - <65%

65 - <70%

70 - <75%

>=75%

DCD

Figure 13.4 Consent/authorisation rates by English SHA/country

61.2%

72.4%

72.9%

68.4%

61.9%

67.3%71.7%

58.4%

65.5%

73.8%

75%

78.1%

65.1%

45.5%

60.9%

53.1%

46.5%

44.2%

48.1%54.1%

51.3%

53.9%

49.6%

59.7%

50.7%

40.8%

Across the Organ Donation Services Teams, the DBD consent/authorisation rates range from 57.1% in the London team to 78.5% in the South Central team. DCD consent/authorisation rates range from 42.9% in the South Wales team to 62.4% in the Northern team.

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DBD

Consent/authorisation rates

40 - <45%

45 - <50%

50 - <55%

55 - <60%

60 - <65%

65 - <70%

70 - <75%

>=75%

DCD

Figure 13.5 Consent/authorisation rates by Organ Donation Services Team

72.2%

57.1%

65.6%

72.7%

72.4%61.2%

78.1%

78.5%63.6%

64.7%

68.5%

66.3%

54.3%

51.9%

46.7%

50%

62.4%45.5%

50.7%

50.7%51.8%

42.9%

61.4%

44.4%

Table 13.9 shows the consent/ authorisation rate separately for white patients and patients from ethnic minority groups. The DBD consent/ authorisation rates for white patients and patients from ethnic minority groups were 72.5% and 35.5%, respectively. A smaller, but still significant, difference was observed for DCD consent/ authorisation rates: 54.3% and 31.0%, respectively. (Note that there were an additional 22 DBD and 99 DCD families approached where the ethnicity was not known or not reported.) Scotland and Northern Ireland each accounted for only 1% of families from ethnic minority groups approached for a decision about organ donation, whereas London accounted for 42%. Most teams had a very small proportion, therefore accounting for some of the variation observed in overall consent/ authorisation rates between teams. Note that consent/ authorisation rates have not been provided where the number of families approached is less than ten.

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Table 13.9 DBD and DCD consent/authorisation rates from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by Organ Donation Services Team (ODST) and ethnicity

White eligible donors Eligible donors from ethnic minority groups All

ODST

Number of eligible DBD

donors whose family

were approached

DBD consent/

authorisation rate (%)

Number of eligible DCD

donors whose family

were approached

DCD consent/

authorisation rate (%)

Overall consent/

authorisation rate (%)

Number of eligible DBD

donors whose family

were approached

DBD consent/

authorisation rate (%)

Number of eligible DCD

donors whose family

were approached

DCD consent/

authorisation rate (%)

Overall consent/

authorisation rate (%)

Overall consent/

authorisation rate (%) 1

Eastern 100 75.0 182 56.6 63.1 13 46.2 6 - 52.6 60.9 London 121 66.9 138 58.7 62.5 53 35.8 46 32.6 34.3 54.4 Midlands 105 71.4 209 50.7 57.6 14 28.6 17 11.8 19.4 53.1 North West 103 75.7 177 53.1 61.4 6 - 10 20.0 18.8 58.1 Northern 71 76.1 90 67.8 71.4 3 - 2 - - 66.7 Northern Ireland 45 62.2 44 45.5 53.9 3 - 0 - - 53.8 Scotland 71 80.3 129 53.5 63.0 1 - 2 - - 60.1 South Central 70 85.7 128 54.7 65.7 8 - 8 - 31.3 60.4 South East 90 66.7 133 53.4 58.7 15 46.7 7 - 36.4 56.9 South Wales 47 66.0 68 44.1 53.0 2 - 2 - - 51.6 South West 53 69.8 152 61.2 63.4 0 - 4 - - 63.2 Yorkshire 78 70.5 154 47.4 55.2 6 - 9 - 26.7 51.8 TOTAL 954 72.5 1604 54.3 61.1 124 35.5 113 31.0 33.3 57.4 1 Includes 121 families approached where the ethnicity was not known or not reported

13.6 Specialist Nurse - Organ Donation (SN-OD) involvement Table 13.10 shows the proportion of family approaches that involved a SN-OD, for DBD and DCD separately, and overall. Nationally, 78.9% of DBD and 66.7% of DCD family approaches involved a SN-OD, but there is wide variation between teams. Table 13.11 shows the effect on the consent/ authorisation rate when a SN-OD is involved or not involved in the approach to a family for a decision about organ donation. Evidence shows that the family are more likely to consent to/ authorise donation when a trained SN-OD is involved in the approach and this is particularly apparent for eligible DCD donors. Again, there is wide variation between teams.

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Caution should be applied when interpreting these rates as no account has been taken of approaches initiated by the family, ODR status or ethnicity.

Table 13.10 Percentage of family approaches involving a Specialist Nurse - Organ Donation (SN-OD) from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by Organ Donation Services Team (ODST) DBD DCD All

ODST

Number of eligible donors whose family

were approached

Number of eligible donors where SN-OD

involved in approach

Percentage of approaches

that involved a SN-OD (%)

Number of eligible donors whose family

were approached

Number of eligible donors where SN-OD

involved in approach

Percentage of approaches

that involved a SN-OD (%)

Overall percentage of DBD/DCD

approaches that involved a SN-OD

(%) Eastern 115 95 82.6 197 149 75.6 78.2 London 175 160 91.4 189 161 85.2 88.2 Midlands 125 72 57.6 246 128 52.0 53.9 North West 110 98 89.1 198 157 79.3 82.8 Northern 76 57 75.0 101 59 58.4 65.5 Northern Ireland 49 43 87.8 44 35 79.5 83.9 Scotland 73 54 74.0 140 74 52.9 60.1 South Central 79 73 92.4 146 108 74.0 80.4 South East 107 91 85.0 141 117 83.0 83.9 South Wales 51 32 62.7 77 53 68.8 66.4 South West 54 28 51.9 166 61 36.7 40.5 Yorkshire 86 65 75.6 171 110 64.3 68.1 TOTAL 1100 868 78.9 1816 1212 66.7 71.3

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Table 13.11 DBD and DCD consent/authorisation rates with/without SN-OD involvement from the Potential Donor Audit, 1 April 2012 to 31 March 2013, by Organ Donation Services Team (ODST)

SN-OD involved in approach SN-OD not involved in approach All

ODST

Number of eligible DBD

donors whose family

were approached

DBD consent/

authorisation rate (%)

Number of eligible DCD

donors whose family

were approached

DCD consent/

authorisation rate (%)

Overall consent/

authorisation rate (%)

Number of eligible DBD

donors whose family

were approached

DBD consent/

authorisation rate (%)

Number of eligible DCD

donors whose family

were approached

DCD consent/

authorisation rate (%)

Overall consent/

authorisation rate (%)

Overall consent/

authorisation rate (%)

Eastern 95 72.6 149 65.8 68.4 20 70.0 48 18.8 33.8 60.9 London 160 56.9 161 50.9 53.9 15 60.0 28 57.1 58.1 54.4 Midlands 72 69.4 128 63.3 65.5 53 60.4 118 28.8 38.6 53.1 North West 98 77.6 157 61.8 67.8 12 33.3 41 4.9 11.3 58.1 Northern 57 75.4 59 67.8 71.6 19 63.2 42 54.8 57.4 66.7 Northern Ireland 43 67.4 35 57.1 62.8 6 16.7 9 0.0 6.7 53.8 Scotland 54 88.9 74 74.3 80.5 19 47.4 66 24.2 29.4 60.1 South Central 73 82.2 108 61.1 69.6 6 33.3 38 21.1 22.7 60.4 South East 91 67.0 117 59.0 62.5 16 43.8 24 16.7 27.5 56.9 South Wales 32 75.0 53 49.1 58.8 19 47.4 24 29.2 37.2 51.6 South West 28 78.6 61 78.7 78.7 26 57.7 105 51.4 52.7 63.2 Yorkshire 65 76.9 110 57.3 64.6 21 33.3 61 21.3 24.4 51.8 TOTAL 868 71.8 1212 61.5 65.8 232 52.2 604 30.8 36.7 57.4

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13.7 Comparison with previous years Table 13.12 shows the key metrics from the PDA for the last three financial years. An increase has been observed in the neurological death testing rate, but 22% of patients who met the criteria were not tested in 2012-2013. Details, such as the reasons for not testing, can be found in the accompanying PDA Annual Report available at http://www.organdonation.nhs.uk/statistics/potential_donor_audit/. Increases have been observed in the rates of referral to the SN-ODs, especially for DCD. The DBD approach rate has remained static at 93%, but an increase has been observed in the DCD approach rate. Increases have also been observed in the proportion of approaches involving a SN-OD for both DBD and DCD. A slight increase in the DBD consent/ authorisation rate has been observed, but there has been no real change for DCD. However, the actual number of families consenting to/ authorising donation has increased, especially for DCD. Overall, approximately 300 more families consented to/ authorised donation in 2012-2013 compared with 2010-2011, and approximately 200 more compared with 2011-2012.

Table 13.12 DBD and DCD key metrics from the Potential Donor Audit, by financial year

Eligible donor type

Financial year

Number of patients who met referral criteria 1

Neurological death testing

rate (%) Referral rate (%)

Number of eligible donors

Number of eligible

donors whose family were approached

Approach rate (%)

Proportion of family

approaches involving a SN-OD (%)

Number of families who consented

to/ authorised donation

Consent/ authorisation

rate (%)

Number of actual donors 2

DBD 2010-2011 1676 72.1 84.5 1144 1059 92.6 67.5 683 64.5 617

2011-2012 1661 74.2 90.7 1169 1090 93.2 71.1 694 63.7 636 2012-2013 1631 77.7 91.5 1188 1100 92.6 78.9 744 67.6 676

DCD 2010-2011 7221 44.3 2883 1359 47.1 53.5 693 51.0 342

2011-2012 6902 52.6 2933 1598 54.5 57.9 794 49.7 390 2012-2013 6960 62.4 3114 1816 58.3 66.7 931 51.3 449

TOTAL 2010-2011 8897 51.9 4027 2418 60.0 59.6 1376 56.9 959

2011-2012 8563 60.0 4102 2688 65.5 63.2 1488 55.4 1026 2012-2013 8591 67.9 4302 2916 67.8 71.3 1675 57.4 1125

1 DBD referral criteria: patients where neurological death was suspected; DCD referral criteria: patients for whom imminent death was anticipated 2 Actual donors resulting from eligible DBD donors includes 6 DCD donors in 2010-2011, 11 DCD donors in 2011-2012 and 18 DCD donors in 2012-2013

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Appendices

Appendices

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Appendix I provides details of the 1,212 deceased organ donors reported in 2012-2013. Details are given for each donating hospital and the hospitals have been grouped by former English Strategic Health Authority and country. This appendix does not reflect regional retrieval rates: for example, in Wales three of the donating hospitals reported are listed under Liverpool for kidney retrievals. The number of donors by donor country/ former Strategic Health Authority of residence is given for donors after brain death in Appendix IIA and donors after circulatory death in Appendix IIB. The populations used for country/ former Strategic Health Authority per million population are given in Appendix III these populations are mid-2011 estimates based on ONS 2011 Census figures.

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Appendix 1 Deceased solid organ donors and donated organs in the UK, 1 April 2012 - 31 March 2013 (2011-2012), by donating hospital Donating hospital DBD DCD All donors Multi-organ

donor Kidney Heart Lung Liver Pancreas

East Midlands Boston, Pilgrim Hospital 1 (3) 0 (0) 1 (3) 1 (2) 2 1 0 1 1 Chesterfield, Chesterfield Royal Hospital 1 (2) 0 (0) 1 (2) 1 (1) 1 0 0 1 0 Derby, Royal Derby Hospital 2 (5) 2 (2) 4 (7) 3 (4) 8 1 0 3 2 Kettering, Kettering General Hospital 7 (3) 1 (3) 8 (6) 7 (3) 14 1 6 6 3 Leicester, Glenfield General Hospital 1 (0) 2 (0) 3 (0) 2 (0) 6 0 0 2 1 Leicester, Leicester Royal Infirmary 4 (9) 2 (1) 6 (10) 4 (9) 10 1 0 5 3 Lincoln, Lincoln County Hospital 0 (1) 2 (3) 2 (4) 0 (1) 3 0 0 0 0 Northampton, Northampton General Hospital 0 (2) 2 (1) 2 (3) 1 (2) 3 0 0 1 0 Nottingham, Nottingham City Hospital 1 (0) 1 (1) 2 (1) 0 (1) 2 0 0 1 0 Nottingham, Nottingham University Hospital 5 (6) 10 (6) 15 (12) 9 (8) 30 1 2 8 3 Sutton-In-Ashfield, King's Mill Hospital 3 (1) 2 (2) 5 (3) 4 (3) 10 1 2 2 4 Total 25 (32) 24 (19) 49 (51) 32 (34) 89 6 10 30 17 East of England Basildon, Basildon Hospital 5 (3) 3 (0) 8 (3) 4 (3) 14 0 0 5 1 Bedford, Bedford Hospital 3 (2) 3 (9) 6 (11) 3 (4) 12 1 2 3 1 Bury St Edmunds, West Suffolk Hospital 1 (1) 3 (2) 4 (3) 2 (1) 8 0 0 2 1 Cambridge, Addenbrooke's Hospital 20 (17) 25 (14) 45 (31) 28 (20) 86 7 14 23 17 Chelmsford, Broomfield Hospital 6 (1) 0 (0) 6 (1) 6 (1) 12 2 4 6 4 Colchester, Colchester General Hospital 0 (1) 6 (0) 6 (1) 2 (1) 12 0 0 1 1 Great Yarmouth, James Paget Hospital 3 (3) 7 (2) 10 (5) 4 (4) 20 0 0 4 1 Harlow, Princess Alexandra Hospital 5 (1) 0 (0) 5 (1) 5 (1) 10 0 6 5 4 Huntingdon, Hinchingbrooke Hospital 1 (1) 1 (3) 2 (4) 1 (0) 4 0 0 1 0 Ipswich, Ipswich Hospital 2 (3) 4 (3) 6 (6) 4 (5) 12 1 2 3 3 Kings Lynn, The Queen Elizabeth Hospital 1 (0) 2 (0) 3 (0) 2 (0) 6 0 0 2 0 Luton, Luton And Dunstable Hospital 4 (4) 5 (3) 9 (7) 6 (7) 18 0 0 6 3 Norwich, Norfolk And Norwich University Hospital 6 (7) 10 (4) 16 (11) 10 (8) 30 1 8 11 8 Papworth, Papworth Hospital 1 (2) 3 (1) 4 (3) 2 (2) 8 0 2 2 0 Peterborough, Peterborough City Hospital 0 (2) 1 (0) 1 (2) 1 (2) 2 0 0 1 1 Stevenage, Lister Hospital 3 (2) 3 (2) 6 (4) 4 (3) 12 0 2 4 1 Watford, Watford General Hospital 1 (4) 1 (1) 2 (5) 2 (5) 4 0 2 2 1 Welwyn Garden City, Queen Elizabeth Hospital 1 (3) 0 (0) 1 (3) 1 (3) 2 0 0 1 1 Westcliff On Sea, Southend Hospital 4 (3) 2 (0) 6 (3) 5 (2) 12 0 2 5 1 Total 67 (60) 79 (44) 146 (104) 92 (72) 284 12 44 87 49

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Donating hospital DBD DCD All donors Multi-organ

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London Barnet, Barnet General Hospital 0 (1) 3 (0) 3 (1) 1 (1) 6 0 0 0 1 Carshalton, St Helier Hospital 1 (2) 0 (0) 1 (2) 1 (2) 2 0 0 1 1 Chelsea, Chelsea And Westminster Hospital 1 (1) 1 (0) 2 (1) 1 (1) 4 0 0 1 1 Croydon, Mayday University Hospital 0 (4) 1 (0) 1 (4) 1 (4) 2 0 2 0 0 Enfield, Chase Farm Hospital 1 (0) 2 (0) 3 (0) 3 (0) 6 0 0 3 1 Evelina Childrens Hospital 1 (0) 0 (1) 1 (1) 1 (0) 2 0 0 1 0 Harefield, Harefield Hospital 1 (1) 4 (1) 5 (2) 3 (2) 10 0 0 3 1 Harrow, Northwick Park Hospital 6 (3) 1 (1) 7 (4) 6 (2) 12 0 0 7 2 Ilford, King George Hospital 1 (0) 1 (0) 2 (0) 0 (0) 2 0 0 1 0 Isleworth, West Middlesex University Hospital 3 (2) 0 (0) 3 (2) 3 (1) 6 0 2 3 2 Kingston, Kingston Hospital 2 (1) 1 (0) 3 (1) 3 (0) 6 0 2 3 1 London, Charing Cross Hospital 3 (10) 2 (2) 5 (12) 4 (11) 10 0 0 4 3 London, Great Ormond Street Hospital For Children 0 (2) 1 (3) 1 (5) 0 (4) 2 0 0 0 0 London, Hammersmith Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 London, Heart Hospital 0 (1) 0 (1) 0 (2) 0 (2) 0 0 0 0 0 London, King's College Hospital 22 (8) 13 (5) 35 (13) 26 (13) 67 6 16 26 15 London, National Hospital For Neurology And Neurosurgery 15 (10) 1 (4) 16 (14) 14 (11) 32 2 2 14 9 London, Newham General Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 London, North Middlesex Hospital 1 (2) 1 (0) 2 (2) 1 (2) 4 1 0 1 0 London, Queen Elizabeth Hospital 3 (0) 3 (0) 6 (0) 5 (0) 12 0 0 4 2 London, Royal Brompton Hospital 1 (0) 0 (1) 1 (1) 1 (1) 2 0 0 1 1 London, Royal Free Hospital 4 (4) 1 (1) 5 (5) 4 (3) 9 1 0 4 2 London, St George's Hospital 19 (19) 2 (4) 21 (23) 19 (22) 38 5 13 18 15 London, St Mary's Hospital 2 (3) 4 (1) 6 (4) 4 (3) 10 1 2 3 3 London, St Thomas' Hospital 3 (5) 2 (5) 5 (10) 4 (4) 10 0 0 3 2 London, The London Chest Hospital 0 (1) 1 (3) 1 (4) 1 (3) 2 0 0 1 0 London, The Royal London Hospital (Whitechapel) 12 (18) 5 (4) 17 (22) 15 (19) 33 5 4 14 11 London, The Whittington Hospital 0 (2) 1 (0) 1 (2) 0 (2) 2 0 0 0 0 London, University College Hospital 1 (0) 1 (1) 2 (1) 0 (1) 4 0 0 0 0 London, University Hospital Lewisham 0 (0) 0 (1) 0 (1) 0 (0) 0 0 0 0 0 London, Whipps Cross Hospital 1 (0) 3 (2) 4 (2) 3 (1) 8 0 2 3 2 Orpington, Princess Royal University Hospital 2 (0) 1 (0) 3 (0) 3 (0) 6 0 0 3 0 Romford, Queens Hospital 12 (7) 9 (8) 21 (15) 12 (10) 38 1 6 12 6 Southall, Ealing Hospital 0 (0) 1 (0) 1 (0) 0 (0) 2 0 0 0 0 Stanmore, Royal National Orthopaedic Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Uxbridge, Hillingdon Hospital 2 (3) 1 (0) 3 (3) 2 (3) 6 0 0 2 0 Total 120 (113) 67 (49) 187 (162) 141 (131) 355 22 51 136 81

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Donating hospital DBD DCD All donors Multi-organ

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North East Ashington, Wansbeck Hospital 2 (2) 3 (3) 5 (5) 2 (2) 9 0 0 2 0 Darlington, Darlington Memorial Hospital 3 (0) 2 (5) 5 (5) 3 (1) 10 0 0 3 0 Durham, University Hospital Of North Durham 4 (4) 0 (0) 4 (4) 4 (4) 7 1 0 4 1 Gateshead, Queen Elizabeth Hospital 1 (2) 4 (2) 5 (4) 1 (1) 10 0 2 0 0 Hartlepool, University Hospital Of Hartlepool 1 (1) 0 (0) 1 (1) 1 (1) 2 0 0 1 0 Middlesbrough, The James Cook University Hospital 13 (5) 5 (8) 18 (13) 14 (7) 30 3 9 14 11 Newcastle, Freeman Hospital 2 (1) 2 (3) 4 (4) 2 (2) 8 0 0 2 0 Newcastle, Royal Victoria Infirmary 23 (19) 11 (4) 34 (23) 25 (19) 63 7 30 21 18 North Shields, North Tyneside General Hospital 0 (1) 5 (0) 5 (1) 1 (1) 8 0 0 2 0 Northallerton, Friarage Hospital 0 (0) 0 (1) 0 (1) 0 (0) 0 0 0 0 0 South Shields, South Tyneside District General Hospital 0 (2) 3 (1) 3 (3) 0 (1) 4 0 0 0 0 Stockton-On-Tees, University Hospital Of North Tees 3 (2) 1 (2) 4 (4) 3 (1) 5 1 4 2 2 Sunderland, Sunderland Royal Hospital 2 (3) 1 (3) 3 (6) 2 (3) 6 1 2 2 1 Total 54 (42) 37 (32) 91 (74) 58 (43) 162 13 47 53 33 North West Ashton-Under-Lyne, Tameside General Hospital 1 (2) 0 (1) 1 (3) 1 (2) 2 1 0 1 1 Barrow-In-Furness, Furness General Hospital 3 (1) 0 (0) 3 (1) 3 (0) 6 0 0 3 2 Blackburn, Royal Blackburn Hospital 2 (3) 0 (3) 2 (6) 1 (3) 4 0 2 1 0 Blackpool, Blackpool Victoria Hospital 2 (1) 1 (2) 3 (3) 1 (1) 4 0 1 2 1 Bolton, Royal Bolton Hospital 1 (1) 1 (3) 2 (4) 1 (3) 4 0 0 1 0 Bury, Fairfield General Hospital 3 (0) 2 (2) 5 (2) 3 (1) 10 0 2 3 2 Carlisle, Cumberland Infirmary 0 (0) 3 (2) 3 (2) 2 (1) 6 0 2 1 1 Chester, Countess Of Chester Hospital 0 (1) 0 (1) 0 (2) 0 (0) 0 0 0 0 0 Crewe, Leighton Hospital 0 (1) 2 (3) 2 (4) 1 (2) 4 0 0 1 0 Lancaster, Royal Lancaster Infirmary 1 (3) 1 (0) 2 (3) 0 (3) 2 0 0 1 0 Liverpool, Alder Hey Children's Hospital 1 (1) 0 (0) 1 (1) 1 (1) 2 1 0 1 1 Liverpool, Liverpool Heart And Chest Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Liverpool, Royal Liverpool University Hospital 4 (3) 2 (2) 6 (5) 5 (2) 12 0 0 4 3 Liverpool, University Hospital Aintree 2 (2) 2 (1) 4 (3) 2 (3) 8 2 0 1 1 Liverpool, Walton Centre For Neurology And Neurosurgery 8 (10) 1 (4) 9 (14) 8 (9) 16 2 2 9 5 Macclesfield, Macclesfield District General Hospital 0 (1) 2 (0) 2 (1) 1 (1) 4 0 0 1 0 Manchester, Manchester Royal Infirmary 3 (6) 2 (0) 5 (6) 4 (6) 10 0 3 4 2 Manchester, North Manchester General Hospital 0 (0) 2 (2) 2 (2) 0 (1) 3 0 0 0 0 Manchester, Royal Manchester Children's Hospital 0 (2) 0 (0) 0 (2) 0 (2) 0 0 0 0 0 Manchester, Trafford General Hospital 1 (0) 0 (0) 1 (0) 1 (0) 2 0 2 1 1

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Manchester, Wythenshawe Hospital 1 (5) 0 (2) 1 (7) 1 (3) 2 0 0 1 1 Oldham, Royal Oldham Hospital (Rochdale Road) 1 (1) 0 (1) 1 (2) 1 (2) 2 0 1 1 1 Prescot, Whiston Hospital 4 (2) 3 (1) 7 (3) 4 (2) 12 0 4 4 2 Preston, Royal Preston Hospital 5 (6) 4 (7) 9 (13) 8 (10) 16 1 4 8 4 Salford, Salford Royal 12 (6) 9 (9) 21 (15) 14 (7) 39 2 7 14 8 Southport, Southport District General Hospital 1 (4) 0 (0) 1 (4) 1 (4) 2 0 0 1 0 Stockport, Stepping Hill Hospital 1 (1) 0 (0) 1 (1) 0 (1) 2 0 0 0 0 Warrington, Warrington Hospital 3 (0) 3 (1) 6 (1) 4 (0) 12 0 2 4 2 Whitehaven, West Cumberland Hospital 0 (1) 1 (2) 1 (3) 0 (1) 2 0 0 0 0 Wigan, Royal Albert Edward Infirmary 1 (3) 3 (0) 4 (3) 2 (3) 8 0 1 2 1 Wirral, Arrowe Park Hospital 5 (3) 1 (3) 6 (6) 3 (3) 12 2 4 3 2 Total 66 (71) 45 (52) 111 (123) 73 (78) 208 11 37 73 41 South Central Aylesbury, Stoke Mandeville Hospital 0 (4) 2 (1) 2 (5) 0 (4) 4 0 0 0 0 Basingstoke, North Hampshire Hospital 1 (0) 1 (1) 2 (1) 1 (0) 4 0 0 1 0 Milton Keynes, Milton Keynes General Hospital 3 (1) 1 (0) 4 (1) 3 (1) 8 1 2 3 1 Newport, St Mary's Hospital 0 (1) 1 (1) 1 (2) 1 (2) 2 0 0 1 1 Oxford, John Radcliffe Hospital 16 (15) 4 (5) 20 (20) 14 (19) 34 3 3 17 10 Portsmouth, Queen Alexandra Hospital 5 (8) 3 (2) 8 (10) 5 (10) 14 0 0 6 2 Reading, Royal Berkshire Hospital 3 (1) 4 (1) 7 (2) 3 (2) 12 2 0 4 2 Slough, Wexham Park Hospital 1 (3) 2 (1) 3 (4) 1 (4) 4 0 0 2 0 Southampton, Southampton University Hospitals 14 (9) 8 (5) 22 (14) 19 (12) 44 3 16 19 12 Winchester, Royal Hampshire County Hospital 2 (1) 0 (1) 2 (2) 2 (1) 4 0 0 2 0 Wycombe, Wycombe General Hospital 3 (1) 0 (0) 3 (1) 3 (1) 4 0 2 3 3 Total 48 (44) 26 (18) 74 (62) 52 (56) 134 9 23 58 31 South East Coast Ashford, William Harvey Hospital 4 (3) 1 (2) 5 (5) 2 (3) 6 0 0 3 2 Brighton, Royal Sussex County Hospital 4 (3) 4 (2) 8 (5) 6 (3) 16 1 4 6 4 Camberley, Frimley Park Hospital 3 (1) 4 (3) 7 (4) 3 (2) 10 0 0 4 1 Canterbury, Kent And Canterbury Hospital 0 (1) 1 (0) 1 (1) 0 (0) 2 0 0 0 0 Chertsey, St Peter's Hospital 1 (3) 1 (1) 2 (4) 1 (3) 2 0 0 2 0 Chichester, St Richard's Hospital 2 (1) 1 (0) 3 (1) 3 (1) 6 1 2 3 1 Dartford, Darent Valley Hospital 2 (0) 3 (1) 5 (1) 2 (1) 10 1 2 2 0 Eastbourne, Eastbourne District General Hospital 1 (3) 1 (2) 2 (5) 1 (4) 4 1 0 1 1 Gillingham, Medway Hospital 4 (4) 1 (0) 5 (4) 3 (4) 5 1 0 4 2

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Guildford, Royal Surrey County Hospital 1 (2) 0 (2) 1 (4) 1 (2) 2 1 2 1 1 Hastings, Conquest Hospital 1 (2) 0 (1) 1 (3) 1 (3) 2 0 0 1 0 Haywards Heath, Hurstwood Park Hospital 3 (3) 1 (0) 4 (3) 4 (3) 8 1 4 4 3 Haywards Heath, Princess Royal Hospital 1 (0) 0 (0) 1 (0) 1 (0) 2 0 2 1 0 Maidstone, Maidstone District General Hospital 2 (0) 1 (3) 3 (3) 2 (2) 6 0 0 2 2 Margate, Queen Elizabeth The Queen Mother Hospital 0 (1) 0 (0) 0 (1) 0 (0) 0 0 0 0 0 Redhill, East Surrey Hospital 2 (1) 1 (1) 3 (2) 3 (1) 6 0 2 3 1 Tunbridge Wells, Kent And Sussex Hospital 0 (2) 0 (1) 0 (3) 0 (2) 0 0 0 0 0 Tunbridge Wells, Tunbridge Wells Hospital 0 (0) 2 (0) 2 (0) 1 (0) 4 0 0 1 0 Worthing, Worthing Hospital 1 (4) 0 (1) 1 (5) 1 (3) 2 0 0 1 1 Total 32 (34) 22 (20) 54 (54) 35 (37) 93 7 18 39 19 South West Barnstaple, North Devon District Hospital 2 (0) 3 (2) 5 (2) 3 (2) 10 0 2 3 1 Bath, Royal United Hospital 4 (0) 4 (3) 8 (3) 5 (1) 16 2 2 5 1 Bournemouth, Royal Bournemouth General Hospital 2 (3) 4 (1) 6 (4) 5 (2) 12 0 0 5 2 Bristol, Bristol Royal Hospital For Children 0 (3) 2 (0) 2 (3) 2 (3) 4 0 2 2 2 Bristol, Bristol Royal Infirmary 4 (3) 3 (5) 7 (8) 4 (6) 13 0 0 4 1 Bristol, Frenchay Hospital 7 (11) 9 (11) 16 (22) 11 (17) 32 1 8 10 6 Bristol, Southmead Hospital 0 (0) 0 (1) 0 (1) 0 (0) 0 0 0 0 0 Cheltenham, Cheltenham General Hospital 2 (0) 2 (1) 4 (1) 1 (0) 8 0 0 1 1 Dorchester, Dorset County Hospital 2 (0) 3 (3) 5 (3) 3 (1) 8 1 2 4 1 Exeter, Royal Devon And Exeter Hospital (Wonford) 1 (0) 0 (2) 1 (2) 1 (1) 2 1 0 1 1 Gloucester, Gloucestershire Royal Hospital 5 (0) 5 (3) 10 (3) 7 (1) 18 2 0 7 4 Plymouth, Derriford Hospital 8 (4) 7 (15) 15 (19) 13 (12) 30 0 6 12 6 Poole, Poole General Hospital 2 (0) 3 (1) 5 (1) 3 (1) 10 0 0 3 1 Salisbury, Salisbury District Hospital 0 (0) 0 (2) 0 (2) 0 (1) 0 0 0 0 0 Swindon, Great Western Hospital 7 (2) 4 (4) 11 (6) 7 (3) 21 1 2 7 2 Taunton, Taunton And Somerset Hospital (Musgrove Park) 1 (2) 2 (2) 3 (4) 1 (3) 6 0 0 1 0 Torquay, Torbay Hospital 0 (3) 1 (5) 1 (8) 0 (6) 2 0 0 0 0 Truro, Royal Cornwall Hospital (Treliske) 1 (2) 1 (3) 2 (5) 1 (5) 4 1 0 1 1 Weston-Super-Mare, Weston General Hospital 0 (1) 1 (1) 1 (2) 1 (1) 2 0 0 1 0 Yeovil, Yeovil District Hospital 2 (1) 2 (1) 4 (2) 3 (1) 6 0 2 3 2 Total 50 (35) 56 (66) 106 (101) 71 (67) 204 9 26 70 32 West Midlands Birmingham, Birmingham Children's Hospital 4 (1) 0 (0) 4 (1) 4 (0) 8 3 0 3 2

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Birmingham, Birmingham Heartlands Hospital 3 (1) 1 (0) 4 (1) 3 (1) 8 0 2 3 0 Birmingham, City Hospital 3 (2) 0 (1) 3 (3) 3 (2) 6 0 1 3 2 Birmingham, Queen Elizabeth Hospital Birmingham 18 (12) 8 (7) 26 (19) 25 (17) 51 8 16 24 17 Coventry, University Hospital 4 (8) 13 (5) 17 (13) 11 (9) 34 0 2 10 5 Dudley, Russells Hall Hospital 1 (0) 1 (1) 2 (1) 2 (0) 3 0 2 2 0 Hereford, The County Hospital 2 (2) 3 (2) 5 (4) 3 (2) 8 0 2 3 3 Nuneaton, George Eliot Hospital 1 (1) 0 (1) 1 (2) 1 (1) 2 0 0 1 1 Redditch, The Alexandra Hospital 2 (1) 2 (3) 4 (4) 2 (3) 8 0 2 2 1 Shrewsbury, Royal Shrewsbury Hospital 1 (0) 1 (1) 2 (1) 2 (1) 4 1 0 2 2 Solihull, Solihull Hospital 0 (0) 0 (1) 0 (1) 0 (1) 0 0 0 0 0 Stafford, Stafford Hospital 1 (2) 0 (0) 1 (2) 1 (2) 2 0 0 1 1 Stoke, North Staffordshire Royal Infirmary 0 (8) 0 (8) 0 (16) 0 (13) 0 0 0 0 0 Stoke-On-Trent, University Hospital North Staffordshire 14 (0) 10 (1) 24 (1) 22 (1) 48 2 2 22 11 Sutton Coldfield, Good Hope District General Hosp. 3 (2) 1 (2) 4 (4) 3 (3) 8 3 2 3 2 Telford, The Princess Royal Hospital 1 (1) 2 (0) 3 (1) 1 (1) 4 0 2 2 0 Walsall, Manor Hospital 0 (2) 1 (2) 1 (4) 0 (2) 2 0 0 0 0 Warwick, Warwick Hospital 0 (0) 0 (1) 0 (1) 0 (0) 0 0 0 0 0 West Bromwich, Sandwell General Hospital 2 (1) 0 (0) 2 (1) 2 (1) 4 0 0 2 1 Wolverhampton, New Cross Hospital 6 (4) 1 (2) 7 (6) 5 (5) 10 0 0 7 1 Worcester, Worcestershire Royal Hospital 5 (3) 5 (2) 10 (5) 6 (4) 18 0 0 7 3 Total 71 (51) 49 (40) 120 (91) 96 (69) 228 17 33 97 52 Yorkshire and the Humber Barnsley, Barnsley District General Hospital 2 (0) 2 (0) 4 (0) 1 (0) 8 1 0 1 1 Bradford, Bradford Royal Infirmary 4 (6) 2 (1) 6 (7) 3 (6) 12 0 2 3 1 Cottingham, Castle Hill Hospital 0 (0) 1 (0) 1 (0) 0 (0) 2 0 0 0 0 Dewsbury, Dewsbury And District Hospital 1 (1) 2 (1) 3 (2) 1 (1) 6 0 0 1 0 Doncaster, Doncaster Royal Infirmary 2 (3) 1 (2) 3 (5) 1 (4) 6 0 0 1 0 Grimsby, Diana Princess Of Wales Hospital 2 (0) 0 (0) 2 (0) 2 (0) 4 1 0 2 1 Halifax, Calderdale Royal Hospital 3 (2) 0 (0) 3 (2) 3 (2) 6 0 2 3 1 Harrogate, Harrogate District Hospital 1 (1) 2 (1) 3 (2) 1 (0) 6 0 0 1 1 Huddersfield, Huddersfield Royal Infirmary 2 (5) 4 (3) 6 (8) 4 (6) 12 1 2 2 3 Hull, Hull Royal Infirmary 3 (5) 1 (4) 4 (9) 3 (5) 8 0 2 3 2 Leeds, Leeds General Infirmary 11 (9) 5 (3) 16 (12) 14 (9) 31 2 9 14 7 Leeds, St James's University Hospital 2 (2) 2 (3) 4 (5) 3 (1) 8 2 2 3 2 Rotherham, Rotherham District General Hospital 0 (1) 1 (3) 1 (4) 1 (1) 2 0 0 1 0 Scarborough, Scarborough General Hospital 3 (1) 0 (0) 3 (1) 2 (1) 6 0 2 1 1

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Scunthorpe, Scunthorpe General Hospital 0 (1) 0 (1) 0 (2) 0 (1) 0 0 0 0 0 Sheffield, Northern General Hospital 2 (1) 5 (2) 7 (3) 4 (2) 12 1 4 4 1 Sheffield, Royal Hallamshire Hospital 4 (3) 3 (1) 7 (4) 3 (2) 12 1 4 4 1 Sheffield, Sheffield Children's Hospital 0 (1) 0 (1) 0 (2) 0 (2) 0 0 0 0 0 Wakefield, Pinderfields General Hospital 3 (2) 4 (2) 7 (4) 4 (2) 12 0 0 5 1 Worksop, Bassetlaw District General Hospital 1 (0) 0 (0) 1 (0) 1 (0) 2 0 0 1 0 York, York District Hospital 4 (1) 1 (1) 5 (2) 3 (1) 10 1 2 3 2 Total 50 (45) 36 (29) 86 (74) 54 (46) 165 10 31 53 25 Channel Islands Guernsey, Princess Elizabeth Hospital 0 (2) 0 (1) 0 (3) 0 (2) 0 0 0 0 0 St Helier, Jersey General Hospital 2 (0) 0 (0) 2 (0) 2 (0) 4 0 0 2 2 Total 2 (2) 0 (1) 2 (3) 2 (2) 4 0 0 2 2 Isle of Man Douglas, Nobles I-O-M Hospital 0 (2) 0 (0) 0 (2) 0 (2) 0 0 0 0 0 Total 0 (2) 0 (0) 0 (2) 0 (2) 0 0 0 0 0 England 585 (531) 441 (370) 1026 (901) 706 (637) 1926 116 320 698 382 Northern Ireland Belfast, Antrim Hospital 2 (1) 1 (0) 3 (1) 2 (1) 6 1 0 2 1 Belfast, Mater Infirmorum Hospital 0 (1) 1 (0) 1 (1) 0 (1) 2 0 0 0 0 Belfast, Royal Victoria Hospital 13 (16) 3 (2) 16 (18) 11 (16) 28 4 14 7 7 Belfast, The Ulster Hospital 2 (3) 3 (1) 5 (4) 4 (4) 9 0 2 4 2 Coleraine, Causeway Hospital 3 (3) 1 (0) 4 (3) 2 (1) 8 0 2 2 1 Enniskillen, Erne Hospital 0 (2) 0 (0) 0 (2) 0 (2) 0 0 0 0 0 Londonderry, Altnagelvin Area Hospital 2 (9) 0 (0) 2 (9) 2 (9) 4 0 2 2 1 Portadown, Craigavon Area Hospital 7 (1) 2 (0) 9 (1) 7 (0) 16 1 6 7 3 Total 29 (36) 11 (3) 40 (39) 28 (34) 73 6 26 24 15 Scotland Aberdeen, Aberdeen Royal Infirmary 3 (2) 5 (1) 8 (3) 4 (3) 13 1 6 4 1 Airdrie, Monklands District General Hospital 2 (1) 1 (0) 3 (1) 2 (1) 6 0 0 1 2 Ayr, The Ayr Hospital 1 (0) 2 (0) 3 (0) 3 (0) 6 0 2 2 2 Dumfries, Dumfries And Galloway Royal Infirmary 1 (0) 2 (2) 3 (2) 2 (1) 6 0 0 2 0 Dundee, Ninewells Hospital 5 (9) 2 (1) 7 (10) 5 (10) 12 1 4 6 3

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Donating hospital DBD DCD All donors Multi-organ

donor Kidney Heart Lung Liver Pancreas

Dunfermline, Queen Margaret Hospital 0 (3) 0 (3) 0 (6) 0 (3) 0 0 0 0 0 East Kilbride, Hairmyres Hospital 2 (0) 0 (1) 2 (1) 2 (1) 4 0 2 2 1 Edinburgh, Royal Hospital For Sick Children 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Edinburgh, Royal Infirmary Of Edinburgh 2 (4) 5 (3) 7 (7) 5 (4) 13 0 2 4 1 Edinburgh, Western General Hospital 11 (10) 1 (6) 12 (16) 8 (14) 22 5 2 9 7 Glasgow, Victoria Infirmary 3 (1) 0 (0) 3 (1) 3 (1) 5 1 0 3 1 Glasgow, Golden Jubilee National Hospital 1 (0) 1 (2) 2 (2) 2 (2) 4 0 0 1 1 Glasgow, Royal Hospital For Sick Children 0 (0) 0 (1) 0 (1) 0 (1) 0 0 0 0 0 Glasgow, Southern General Hospital 4 (2) 4 (1) 8 (3) 5 (2) 16 1 4 5 3 Glasgow, Western Infirmary 1 (0) 0 (2) 1 (2) 1 (0) 2 0 2 0 1 Greenock, Inverclyde Royal Hospital 4 (0) 2 (1) 6 (1) 4 (1) 10 1 4 5 2 Glasgow, Golden Jubilee National Hospital 1 (2) 1 (0) 2 (2) 1 (2) 2 0 0 2 0 Inverness, Raigmore Hospital 4 (2) 0 (0) 4 (2) 4 (2) 8 1 2 4 3 Kilmarnock, Crosshouse Hospital 1 (0) 1 (0) 2 (0) 1 (0) 4 0 0 1 0 Kirkcaldy, Victoria Hospital 0 (1) 2 (0) 2 (1) 1 (1) 2 0 2 1 0 Larbert, Forth Valley Royal Hospital 2 (2) 1 (0) 3 (2) 2 (2) 6 0 1 2 1 Livingston, St John's Hospital 1 (3) 3 (2) 4 (5) 2 (3) 7 0 0 1 1 Melrose, Borders General Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Paisley, Royal Alexandra Hospital 4 (5) 0 (0) 4 (5) 3 (3) 6 1 3 3 1 Perth, Perth Royal Infirmary 2 (2) 1 (0) 3 (2) 3 (1) 6 0 2 3 2 Stirling, Stirling Royal Infirmary 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Wishaw, Wishaw General Hospital 1 (1) 4 (2) 5 (3) 2 (1) 10 0 0 2 1 Total 56 (53) 38 (28) 94 (81) 65 (62) 170 12 38 63 34 Wales Abergavenny, Nevill Hall Hospital 0 (1) 0 (1) 0 (2) 0 (1) 0 0 0 0 0 Aberystwyth, Bronglais Hospital 1 (1) 1 (1) 2 (2) 1 (1) 4 0 2 1 1 Bangor, Ysbyty Gwynedd District General Hospital 1 (2) 0 (1) 1 (3) 1 (3) 2 0 1 1 0 Bodelwyddan, Glan Clwyd District General Hospital 1 (2) 2 (3) 3 (5) 2 (4) 6 0 0 2 1 Bridgend, Princess Of Wales Hospital 2 (7) 1 (1) 3 (8) 3 (6) 6 1 0 3 1 Cardiff, University Of Wales Hospital 11 (7) 5 (14) 16 (21) 14 (14) 32 4 10 14 8 Carmarthen, Glangwili General Hospital 1 (0) 0 (0) 1 (0) 1 (0) 2 0 0 1 0 Haverford West, Withybush General Hospital 0 (1) 0 (0) 0 (1) 0 (1) 0 0 0 0 0 Llanelli, Prince Philips Hospital 0 (1) 0 (2) 0 (3) 0 (0) 0 0 0 0 0 Merthyr Tydfil, Prince Charles Hospital 1 (2) 1 (1) 2 (3) 0 (2) 4 0 0 0 0 Newport, Royal Gwent Hospital 6 (1) 1 (4) 7 (5) 4 (3) 12 0 0 5 3 Pontypridd, Royal Glamorgan Hospital 1 (2) 1 (1) 2 (3) 2 (2) 4 0 0 2 0

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Donating hospital DBD DCD All donors Multi-organ

donor Kidney Heart Lung Liver Pancreas

Swansea, Morriston Hospital 4 (3) 3 (5) 7 (8) 2 (5) 8 0 2 5 1 Swansea, Singleton Hospital 0 (1) 0 (0) 0 (1) 0 (0) 0 0 0 0 0 Wrexham, Maelor General Hospital 6 (1) 2 (1) 8 (2) 6 (1) 16 3 0 6 5 Total 35 (32) 17 (35) 52 (67) 36 (43) 96 8 15 40 20

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Appendix IIA Numbers of donors after brain death and organs retrieved in the UK, 1 April 2012 - 31 March 2013, by country/ SHA

Donors Organs Country/ Strategic Health Authority

All donors

pmp Multi-organdonors

pmp Kidney Heart Lung Liver Pancreas

North East 45 17.3 41 15.8 76 9 27 39 24 North West 67 9.5 55 7.8 126 11 37 56 37 Yorkshire and The Humber 53 10.0 43 8.1 100 12 28 46 23 East Midlands 32 7.0 28 6.2 55 7 10 29 16 West Midlands 68 12.1 63 11.2 128 15 29 66 37 East of England 72 12.3 67 11.4 135 15 38 67 40 London 77 9.4 69 8.4 146 14 20 72 37 South East Coast 54 12.1 50 11.2 96 12 34 52 33 South Central 60 14.4 53 12.7 106 9 26 57 33 South West 52 9.8 43 8.1 94 10 14 47 18 England 580 10.9 512 9.6 1062 114 263 531 298 Isle of Man 0 0 0 0 0 0 0 0 0 Channel Islands 3 18.8 3 18.8 6 0 0 3 3 Wales 38 12.4 31 10.1 68 10 11 35 18 Scotland 55 10.5 50 9.5 102 12 30 50 27 Northern Ireland 29 16.0 24 13.3 53 6 20 21 13 TOTAL 705 11.1 620 9.8 1291 142 324 640 359

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Appendix IIB Numbers of donors after circulatory death and organs retrieved in the UK, 1 April 2012 - 31 March 2013, by country/ SHA

Donors Organs Country/ Strategic Health Authority

All donors

pmp Multi-organdonors

pmp Kidney Heart Lung Liver Pancreas

North East 32 12.3 4 1.5 56 0 8 3 1 North West 47 6.7 21 3.0 90 0 9 18 6 Yorkshire and The Humber 34 6.4 16 3.0 67 0 2 14 6 East Midlands 36 7.9 16 3.5 71 0 6 10 9 West Midlands 43 7.7 24 4.3 82 0 2 23 11 East of England 79 13.5 28 4.8 154 0 8 23 15 London 49 6.0 25 3.0 94 0 8 20 13 South East Coast 31 6.9 10 2.2 59 0 0 11 2 South Central 25 6.0 10 2.4 49 0 2 10 3 South West 64 12.1 33 6.2 126 0 12 30 14 England 440 8.3 187 3.5 848 0 57 162 80 Isle of Man 0 0 0 0 0 0 0 0 0 Channel Islands 0 0 0 0 0 0 0 0 0 Wales 18 5.9 9 2.9 36 0 4 9 4 Scotland 38 7.2 16 3.0 70 0 8 12 7 Northern Ireland 11 6.1 3 1.7 20 0 6 2 1 TOTAL 507 8.0 215 3.4 974 0 75 185 92

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Appendix III Populations for SHA's, 2012-2013 Mid-2011 estimates based on ONS 2011 Census figures SHA Retrieval population million North East 2.60 North West 7.06 Yorkshire and The Humber 5.29 East Midlands 4.54 West Midlands 5.61 East of England 5.86 London 8.20 South East Coast 4.48 South Central 4.18 South West 5.30 England 53.11 Isle of Man 0.08 Channel Islands 0.16 Wales 3.06 Scotland 5.25 Northern Ireland 1.81 TOTAL 63.47

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